Hello and thank you for this site. I'm new to this and don't really
know where to start. I have read many emails and it is hard for me to
understand how this has been going on for so long people suffering
with arachnoiditis that is and how the many doctors and test I have
had to go thru. As well as having doctors that didn't even know
anything about it and family not believe you just because they don't
or didn't know what the answer was to the pain. Well, I need to go and
will be back to tell my story of what has changed my life and that of
my loved ones. I'm in pain right now and will be back later. Bren

Hey everyone, this was just sent to me by Business Networking groups's
computer guru. I take him very very seriously. This is what he does for a
living.
Trudy

>        READ AS SOON AS POSSIBLE
> >
> >   Get this sent around to your contacts ASAP...we don't need this
> > spreading around.....
> >
> >
> >
> > PLEASE FORWARD THIS WARNING AMONG FRIENDS, FAMILY AND CONTACTS:
> >
> > You should be alert during the next days:
> >
> >
> > Do not open any message with an attached filed called
> >
> >
> > "Invitation"
> >
> >
> > regardless of who sent it .
> >
> > It is a virus that opens an Olympic Torch which "burns" the whole
hard
> > disc C of your computer. This virus will be received from someone
who
> > has your e-mail address in his/her contact list, that is why you
should
> > send this e-mail to all your contacts. It is better to receive this
> > message 25 times than to receive the virus and open it.
> >
> >
> > If you receive a mail called "invitation", though sent by a
> > friend,do not open it and shut down your computer immediately.
> >
> >
> > This is the worst virus announced by CNN, it has been classified
> > by Microsoft as the most destructive virus ever.
> >
> >
> > This virus was discovered by McAfee yesterday, and there is no
> > repair yet for this kind of virus.
> >
> >
> > This virus simply destroys the Zero Sector of the Hard Disc,
> > where the vital information is kept.
> >
> >
> > SEND THIS E-MAIL TO EVERYONE YOU KNOW, COPY THIS E-MAIL AND SEND
> > IT TO
> >
> >
> > YOUR FRIENDS AND REMEMBER: IF YOU SEND IT TO THEM, YOU WILL BENEFIT
ALL
> > OF U

My name is John Martin from Greensburg PA. I been suffering with
arachnoiditis for 3 years.I had 4 back surgerys until they told me
there was nothing more they could do for me. The pain is unbearable.
they implanted a spinal cord stimulator a few years ago, it helps
about 30% of my pain. I still have to take alot of pain meds. My
damage is around L-4 L-5 . It effects me mainly from my waist down.
I lost 90% of feeling in my legs except for the severe nerve pain
from my lower back to my toes. I can still walk short distances,
with a cane sometimes I have to use a walker or wheelchair. Its like
trying to walk with artificial legs. Its a very hard thing to deal
with, I was very depressed at first,going from being very active to
doing nothing at 44 years of age. I fall all the time. Down the
steps up the steps. Its really embarassing when you fall in public!
I do the best I can with what I have left. It just keeps getting
worse. I had to get hand controls Installed in my truck, I could'nt
feel the pedals anymore. I dont go to many places by my self,
Sometimes I can'nt make it back to my truck with out help. About the
only I enjoy Is alittle fishing. I caught nice 23"- 5lb trout on the
first day of trout season, that made me real happy, until later when
I could'nt walk for 2 days from too much acitivity, But it was worth
it. Its the biggist trout I ever caught. It's hard when your mind
wants to go and your legs don't. It's finally taking it's toll on me
I'm starting to get afaid to do things. Even climing stairs, I'm
afraid of breaking an arm or busting my neck or something. I'm
married and have 3 children   Ages 22  20  17   two girls and a
boy.  they are very supportive and helpfull. I have super nice
doctors,But It would be nice to chat to someone who knows what kind
of pain we are going through, Or like some helpfull support from
person who knows what you are going through. e-mail
martin1254@...

Hello members,

 

My name is Melana. I am from Pa. In 1982 I was in auto accident and permanently injured my cervical spine. I was only 19 yrs. old then. Before that I suffered chronic headaches and muscle pain through childhood and teen yrs also. From the cervical spine injury I suffered chrronic pain and muscle spasms through my left side also. I still chose to work physically demanding jobs all these years. Of course my pain and symptoms worsened. In 2002 I herniated my L4-5 and worsened my cervical spine working with weight machines trying to get stronger. Before that happened i was told by my dr. I only had mild arthritis and fibromyalgia. Well over the past 2 yrs. I have been diagnosed with Arnold Chiari Malformation, Syringomyelia, and other spinal injuries! All the dr.s around here insisted I didn't need any kind of surgery and kept sending me back to my physically demanding job. I was so afraid, confused and angry. Therapy just worsened my symptoms. In July of 2004 I went for what I thought was a safe, commomly performed ESI to hopefully reduce the swelling from the L4-5 herniation and help with the numbness and bladder problems. I was only having this done thinking it would reduce the risk of permanent nerve damage. No other dr.s would help me other than suggesting therapy which just aggravated my symptoms. Well after that injection all my pain and symptoms just worsened also. From the start of my neurological symptoms it was my cervical spine in need of surgical repair and even the best rated Neurosurgery Hospital in this country dismissed my cervical spine as needing repair at that time. I had to go to Great Neck NY to The Chiari Insitute to get the help i needed. In April of 2005 I had anterior cervical disectomy and fusion of C5-6, 6-7 in NY. It was to late though because the advanced cervical myelopathy that developed from the hernations and spondylosis in my neck caused permanent cervical cord damage! Also unknown to me and my neuro was the fact that the previous ESI DEPO MEDROL  lumbar injection caused me after this surgery to develop distinct symptoms of Diffuse Chronic Adhesive Arachnoiditis. It has not been officially diagnosed, but the plans of my neuro form NY to correct the chiari and syrinx were canceled. As now there is still no sign of this disease detected on MRI scans. My neuro from Hershey Pa. advises against any invasive testing or surgery at this time as did a critical spine specialist from Johns Hopkins. Even though my lumbar spine herniation is moderate now. The dr. from Johns Hopkins stated he doesn't think I have AA as does my neuro from NY. Though a pain management dr. believes I have it and so does my neuro from Hershey. Well they think its quite possible. Problem is I can't even get a pain dr. to treat me now and my Primary Dr. is not cooperating with my Hershey neuro either to start me on all the proper drugs for pain and suffering from all these diagnosises. I only take 900 mgs. of neurontin daily, I don't like the weight gain it has caused me or other side effects and it doesn't help much with the nerve symptoms. I also take 20 mgs. Baclofen at night for muscle spasm and spasticity. I take 80 mgs. nexium a day for GERD and I am only taking 600 to 800 mgs. of ibuprofen at times for pain, but none of these meds. do very much in helping to relieve symptoms or pain. I was taking Tramadol, but hated the side effects and found out it interacts with Neurontin and can even cause seizures. I also have immitrix for migraines. Well I have shared alot so far i guess I should stop for now. Anyone who can share much needed info on how to get a diagnoisis of AA, what best treatment for disease and how to connect up with EDMN please email ASAP at kaycofwa62@.... Also I would like anyone to share info about seeking justice and compensation for the damage DEPO MEDROL has done to me.

 

                                                                            sincerely, Melana from Pa.

---

Yahoo! Messenger with Voice. PC-to-Phone calls for ridiculously low rates.

 

Hi, my husband suffers from this disease and has just recently been
diagnosed...he is very discouraged as none of the dozen medications he
has tried has helped alleviate his pain...are there any suggestions
out there?  Also why has no one started a class action suit for this
as he was told the myloegram he had probably caused this!

There is already a large group of arachnoiditis sufferers with good
self support.

Contact Australian Arachnoiditis Sufferers association of NSW inc.
  see website
www.aasansw.org.au

and read through for further info.

Renee

Hi Just read you letter interesing...Where are you
from and do you have a email address I can write you
jon

--- jskibabe61 <lisakthompson@...> wrote:

> Hi, This is my first time posting to a message
> board, so if I'm
> doing it wrong, I apologize. I have recently been
> diagnosed with
> this frustrating condition. I would not have even
> been aware of the
> diagnosis had I not found it in my orthopedic doc's
> office notes
> after requesting copies to fight for long term
> disability benefits.
> The first time I looked up the meaning of
> arachnoiditis on the
> internet, I literally cried out loud. I have lived
> since 1997 with
> the symptoms of having bugs crawling on my feet, or
> water running
> down my leg, but I never mentioned it to my doctors,
> since I thought
> everyone would think I was nuts. FINALLY, I could
> put a name to a
> long list of bizarre, frustrating, and embarrasing
> symptoms. I
> believe I got this disease from a combination of
> spinal trauma from
> an accident (a story in itself), SEVERAL epidural
> spinal injections
> for lumbar pain (two of which caused a CSF leak that
> was corrected
> with a blood patch), and a multi-level fusion (which
> also required a
> 3rd blood patch to correct a severe CSF leak after
> surgery). I was
> appalled when I started reading about the cause of
> this disease, and
> the ignorance and/or lack of accountability on
> behalf of the medical
> community about it. I know that anyone who suffers
> from this disease
> will agree what a travesty it is to sit back and
> witness such a
> cover up by doctors and pharmaceuticals, so when I
> saw someone's
> suggestion about contacting the Oprah show, I
> couldn't resist
> replying. I wholeheartedly agree that her show would
> be an excellent
> and powerful venue to get the word out about our
> condition. To guard
> Oprah's integrity, her staff very thoroughly
> researches all of their
> show topics in a very non-biased, but thorough
> manner before going
> on air. Oprah is such a sincere spokesperson for
> helping to right
> wrongs for those without a voice. Admittedly, my
> knowledge of the
> disease is probably far inferior to many of you who
> have been
> researching it far longer than I have, but I would
> be glad to help
> out in way I can. I do know that when submitting
> topics for a show,
> they usually ask for a video journal about your
> subject. They would
> probably want the stories of as many Arachnoiditis
> sufferers as
> possible to put a voice to "our side of the story".
> I recently lost
> my job as a training manager of a telecommunications
> company because
> my symptoms got too bad for me to continue working.
> I feel safe in
> saying that most of us would love to have the cause
> of this disease
> exposed for what it is...downright deception. I am
> so glad to have
> finally found a group of people who understand what
> I have been
> going through. I'd love any info anyone can provide
> on how to deal
> with some of these horrible symptoms. Thanks to all
> of you for
> having the courage to share your stories. I no
> longer feel so alone.
>
>
> --- In Arachnoiditis@yahoogroups.com, Mvictoria
> zilleruelo-Martin
> <mvzilleruelo@...> wrote:
> >
> > Great idea Sue, however, we would all be filtered
> as SPAM.  I
> think the MEDIA would be an appropriate avenue since
> they love
> senzationalism and scandals!  Anyone thought of
> Oprah?
> >
> > ----- Original Message ----
> > From: sgrabber <sgrabber@...>
> > To: Arachnoiditis@yahoogroups.com
> > Sent: Saturday, February 25, 2006 11:15:34 PM
> > Subject: Re: [Arachnoiditis] Doctors??
> >
> >
> > Could we write maybe 3 different e-mails and every
> send a
> different one every third day.  We may mention that
> since it is
> caused often by surgeons and doctors, it is not
> treated as it should
> be, etc. etc. And, if we all keep sending them ad
> nauseum, with our
> own name signed as well as one person in the group
> who could talk to
> them SHOULD they contact us maybe someone will get
> so tired of
> hearing from us they'll take action.  We all have to
> be of one mind
> to do this.  Three or four little e-mails a week
> won't work.  Sue
> > ----- Original Message -----
> > From: TANKACY2@...
> > To: Arachnoiditis@yahoogroups.com
> > Sent: Saturday, February 25, 2006 10:59 PM
> > Subject: Re: [Arachnoiditis] Doctors??
> >
> >
> > Your on your own unless you can sweet talk your
> family doctor into
> believing your in pain. When my neuro surgeon that
> did my 4 back
> surgeries saw the arachnoiditis on the mri literally
> asked me to
> leave his office and said theres nothing he can do
> for me I was in
> shock. I had gone to this guy since 1986. I went to
> my family doctor
> took all the mri and xray reports  and told her if
> she didn't help
> me that I was going to commit suicide. Of course I'd
> never do that
> but it got the ball rolling and now I go there every
> 2 months and
> she refills my medications each time. Even though
> she didn't know
> anything about arachnoiditis I printed page after
> page of info and
> took it to her and asked if she would at least read
> up on it. She
> now treats me  and at least asks about any new
> symptoms and acts
> like she knows a little about it. If you do try to
> call for an
> appointment at a new neurologist don't even mention
> you have
> arachnoiditis because after explaining it to 8
> different doctors
> >  while trying to get an appointment all I heard
> was either they
> aren't taking new patients or they don't know enough
> about it to
> treat it. If a neurologist doesn't know about it
> then they have been
> living under a rock and aren't keeping up with
> anything. Theres too
> much information out there that we all know so you
> can't tell me
> they are in the dark about it. Most of the info we
> read was written
> by a doctor so they are well aware of what it is.
> They are scared to
> get involved in anything that could have them
> involved in
> malpractice or a law suit. Even though they may not
> have been
> directly responsible for the cause they still don't
> want to touch
> anyone that has it because somewhere down the line
> they could get
> drug into it. My new plan is going to a doctor far
> away from my old
> doctor and im going in there as if im just having
> back pain and once
> im there then let them find everything out for
> themselves. If you've
> ever read the Burton reports they have added some
> things. The
> >  government of New Zealand is now recognizing
> arachnoiditis as a
> very serious disease and they are helping their
> people. They went as
> far as saying that anyone in their country in need
> of a myelogram,
> epidural injections, etc., are being told of the
> high risk of
> developing arach. They even mentioned how the United
> States and UK
> are still injecting things into peoples spines as if
> it just routine
> and not warning any patient about the risks. Even if
> they do warn
>
=== message truncated ===


__________________________________________________
Do You Yahoo!?
Tired of spam?  Yahoo! Mail has the best spam protection around
http://mail.yahoo.com

Hi, This is my first time posting to a message board, so if I'm
doing it wrong, I apologize. I have recently been diagnosed with
this frustrating condition. I would not have even been aware of the
diagnosis had I not found it in my orthopedic doc's office notes
after requesting copies to fight for long term disability benefits.
The first time I looked up the meaning of arachnoiditis on the
internet, I literally cried out loud. I have lived since 1997 with
the symptoms of having bugs crawling on my feet, or water running
down my leg, but I never mentioned it to my doctors, since I thought
everyone would think I was nuts. FINALLY, I could put a name to a
long list of bizarre, frustrating, and embarrasing symptoms. I
believe I got this disease from a combination of spinal trauma from
an accident (a story in itself), SEVERAL epidural spinal injections
for lumbar pain (two of which caused a CSF leak that was corrected
with a blood patch), and a multi-level fusion (which also required a
3rd blood patch to correct a severe CSF leak after surgery). I was
appalled when I started reading about the cause of this disease, and
the ignorance and/or lack of accountability on behalf of the medical
community about it. I know that anyone who suffers from this disease
will agree what a travesty it is to sit back and witness such a
cover up by doctors and pharmaceuticals, so when I saw someone's
suggestion about contacting the Oprah show, I couldn't resist
replying. I wholeheartedly agree that her show would be an excellent
and powerful venue to get the word out about our condition. To guard
Oprah's integrity, her staff very thoroughly researches all of their
show topics in a very non-biased, but thorough manner before going
on air. Oprah is such a sincere spokesperson for helping to right
wrongs for those without a voice. Admittedly, my knowledge of the
disease is probably far inferior to many of you who have been
researching it far longer than I have, but I would be glad to help
out in way I can. I do know that when submitting topics for a show,
they usually ask for a video journal about your subject. They would
probably want the stories of as many Arachnoiditis sufferers as
possible to put a voice to "our side of the story". I recently lost
my job as a training manager of a telecommunications company because
my symptoms got too bad for me to continue working. I feel safe in
saying that most of us would love to have the cause of this disease
exposed for what it is...downright deception. I am so glad to have
finally found a group of people who understand what I have been
going through. I'd love any info anyone can provide on how to deal
with some of these horrible symptoms. Thanks to all of you for
having the courage to share your stories. I no longer feel so alone.


--- In Arachnoiditis@yahoogroups.com, Mvictoria zilleruelo-Martin
<mvzilleruelo@...> wrote:
>
> Great idea Sue, however, we would all be filtered as SPAM.  I
think the MEDIA would be an appropriate avenue since they love
senzationalism and scandals!  Anyone thought of Oprah?
>
> ----- Original Message ----
> From: sgrabber <sgrabber@...>
> To: Arachnoiditis@yahoogroups.com
> Sent: Saturday, February 25, 2006 11:15:34 PM
> Subject: Re: [Arachnoiditis] Doctors??
>
>
> Could we write maybe 3 different e-mails and every send a
different one every third day.  We may mention that since it is
caused often by surgeons and doctors, it is not treated as it should
be, etc. etc. And, if we all keep sending them ad nauseum, with our
own name signed as well as one person in the group who could talk to
them SHOULD they contact us maybe someone will get so tired of
hearing from us they'll take action.  We all have to be of one mind
to do this.  Three or four little e-mails a week won't work.  Sue
> ----- Original Message -----
> From: TANKACY2@...
> To: Arachnoiditis@yahoogroups.com
> Sent: Saturday, February 25, 2006 10:59 PM
> Subject: Re: [Arachnoiditis] Doctors??
>
>
> Your on your own unless you can sweet talk your family doctor into
believing your in pain. When my neuro surgeon that did my 4 back
surgeries saw the arachnoiditis on the mri literally asked me to
leave his office and said theres nothing he can do for me I was in
shock. I had gone to this guy since 1986. I went to my family doctor
took all the mri and xray reports  and told her if she didn't help
me that I was going to commit suicide. Of course I'd never do that
but it got the ball rolling and now I go there every 2 months and
she refills my medications each time. Even though she didn't know
anything about arachnoiditis I printed page after page of info and
took it to her and asked if she would at least read up on it. She
now treats me  and at least asks about any new symptoms and acts
like she knows a little about it. If you do try to call for an
appointment at a new neurologist don't even mention you have
arachnoiditis because after explaining it to 8 different doctors
>  while trying to get an appointment all I heard was either they
aren't taking new patients or they don't know enough about it to
treat it. If a neurologist doesn't know about it then they have been
living under a rock and aren't keeping up with anything. Theres too
much information out there that we all know so you can't tell me
they are in the dark about it. Most of the info we read was written
by a doctor so they are well aware of what it is. They are scared to
get involved in anything that could have them involved in
malpractice or a law suit. Even though they may not have been
directly responsible for the cause they still don't want to touch
anyone that has it because somewhere down the line they could get
drug into it. My new plan is going to a doctor far away from my old
doctor and im going in there as if im just having back pain and once
im there then let them find everything out for themselves. If you've
ever read the Burton reports they have added some things. The
>  government of New Zealand is now recognizing arachnoiditis as a
very serious disease and they are helping their people. They went as
far as saying that anyone in their country in need of a myelogram,
epidural injections, etc., are being told of the high risk of
developing arach. They even mentioned how the United States and UK
are still injecting things into peoples spines as if it just routine
and not warning any patient about the risks. Even if they do warn
you its nothing more than having you sign a paper saying you read
all the big fancy words that the average patient doesn't even know
or understand. If I tell anyone I have arachnoiditis they almost
laugh and say what the heck is that? Its a funny name for a horrible
disease. If you say you have cancer everyone goes "aww im so sorry".
At least with cancer you either get better or die.  With this arah,
you get it, no one treats it, it gets worse, you don't die from it
you just have the same pain that cancer patient had
>  but you get the honors of having it the rest of your life. If the
government doesn't ease up on the restrictions they put on doctors
for prescribing pain medications then we will suffer the rest of our
lives. When a doctor is allowed to prescribe 4 pills a day for pain
because thats all they are allowed to because they will be in
trouble then we are all doomed with this stuff. If im legitimately
in pain around the clock the I should be allowed to have medicine
around the clock. So what if we get dependent or addicted. Its a
life long disease with no cure so that means we need medication
every day from now on.  So I am sitting here right now in pain
because some idiot in the government said IM only allowed a certain
amount of medication. Our government needs to wake up. I don't know
how to go about getting it started but I am going to find out. ALL
of us need to swamp the whitehouse with emails telling them we have
a disease and doctors wont treat us. Theres what..over a
>  hundred members here. Well if everyday all of us kept sending an
email eventually they would have to get doctors involved. In 10 days
we'd have over 1000 emails and just keep mulitplying eventually
someone would have to hear us. Better yet start at a lesser scale,
we can send them to the governor  but we all live in different
states and the number of emails won't add up as well as if they were
sent to the same place like the whitehouse. Short and sweet emails.
Like , we have a disease, we are in pain , no one will help us and
we can't believe you would allow this to go on in our country. Even
if we all sent the same email. It would at least get someones
attention and get them involved maybe. Then maybe doctors won't be
so scared to even say the word..ARACHNOIDITIS!!!!
>
>
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and wellness program
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>
>
>
> YAHOO! GROUPS LINKS
>
>  Visit your group "Arachnoiditis" on the web.
>  
>  To unsubscribe from this group, send an email to:
>  Arachnoiditis-unsubscribe@yahoogroups.com
>  
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Service.
>

Hi, This is my first time posting to a message board, so if I'm
doing it wrong, I apologize. I have recently been diagnosed with
this frustrating condition. I would not have even been aware of the
diagnosis had I not found it in my orthopedic doc's office notes
after requesting copies to fight for long term disability benefits.
The first time I looked up the meaning of arachnoiditis on the
internet, I literally cried out loud. I have lived since 1997 with
the symptoms of having bugs crawling on my feet, or water running
down my leg, but I never mentioned it to my doctors, since I thought
everyone would think I was nuts. FINALLY, I could put a name to a
long list of bizarre, frustrating, and embarrasing symptoms. I
believe I got this disease from a combination of spinal trauma from
an accident (a story in itself), SEVERAL epidural spinal injections
for lumbar pain (two of which caused a CSF leak that was corrected
with a blood patch), and a multi-level fusion (which also required a
3rd blood patch to correct a severe CSF leak after surgery). I was
appalled when I started reading about the cause of this disease, and
the ignorance and/or lack of accountability on behalf of the medical
community about it. I know that anyone who suffers from this disease
will agree what a travesty it is to sit back and witness such a
cover up by doctors and pharmaceuticals, so when I saw someone's
suggestion about contacting the Oprah show, I couldn't resist
replying. I wholeheartedly agree that her show would be an excellent
and powerful venue to get the word out about our condition. To guard
Oprah's integrity, her staff very thoroughly researches all of their
show topics in a very non-biased, but thorough manner before going
on air. Oprah is such a sincere spokesperson for helping to right
wrongs for those without a voice. Admittedly, my knowledge of the
disease is probably far inferior to many of you who have been
researching it far longer than I have, but I would be glad to help
out in way I can. I do know that when submitting topics for a show,
they usually ask for a video journal about your subject. They would
probably want the stories of as many Arachnoiditis sufferers as
possible to put a voice to "our side of the story". I recently lost
my job as a training manager of a telecommunications company because
my symptoms got too bad for me to continue working. I feel safe in
saying that most of us would love to have the cause of this disease
exposed for what it is...downright deception. I am so glad to have
finally found a group of people who understand what I have been
going through. I'd love any info anyone can provide on how to deal
with some of these horrible symptoms. Thanks to all of you for
having the courage to share your stories. I no longer feel so alone.


--- In Arachnoiditis@yahoogroups.com, Mvictoria zilleruelo-Martin
<mvzilleruelo@...> wrote:
>
> Great idea Sue, however, we would all be filtered as SPAM.  I
think the MEDIA would be an appropriate avenue since they love
senzationalism and scandals!  Anyone thought of Oprah?
>
> ----- Original Message ----
> From: sgrabber <sgrabber@...>
> To: Arachnoiditis@yahoogroups.com
> Sent: Saturday, February 25, 2006 11:15:34 PM
> Subject: Re: [Arachnoiditis] Doctors??
>
>
> Could we write maybe 3 different e-mails and every send a
different one every third day.  We may mention that since it is
caused often by surgeons and doctors, it is not treated as it should
be, etc. etc. And, if we all keep sending them ad nauseum, with our
own name signed as well as one person in the group who could talk to
them SHOULD they contact us maybe someone will get so tired of
hearing from us they'll take action.  We all have to be of one mind
to do this.  Three or four little e-mails a week won't work.  Sue
> ----- Original Message -----
> From: TANKACY2@...
> To: Arachnoiditis@yahoogroups.com
> Sent: Saturday, February 25, 2006 10:59 PM
> Subject: Re: [Arachnoiditis] Doctors??
>
>
> Your on your own unless you can sweet talk your family doctor into
believing your in pain. When my neuro surgeon that did my 4 back
surgeries saw the arachnoiditis on the mri literally asked me to
leave his office and said theres nothing he can do for me I was in
shock. I had gone to this guy since 1986. I went to my family doctor
took all the mri and xray reports  and told her if she didn't help
me that I was going to commit suicide. Of course I'd never do that
but it got the ball rolling and now I go there every 2 months and
she refills my medications each time. Even though she didn't know
anything about arachnoiditis I printed page after page of info and
took it to her and asked if she would at least read up on it. She
now treats me  and at least asks about any new symptoms and acts
like she knows a little about it. If you do try to call for an
appointment at a new neurologist don't even mention you have
arachnoiditis because after explaining it to 8 different doctors
>  while trying to get an appointment all I heard was either they
aren't taking new patients or they don't know enough about it to
treat it. If a neurologist doesn't know about it then they have been
living under a rock and aren't keeping up with anything. Theres too
much information out there that we all know so you can't tell me
they are in the dark about it. Most of the info we read was written
by a doctor so they are well aware of what it is. They are scared to
get involved in anything that could have them involved in
malpractice or a law suit. Even though they may not have been
directly responsible for the cause they still don't want to touch
anyone that has it because somewhere down the line they could get
drug into it. My new plan is going to a doctor far away from my old
doctor and im going in there as if im just having back pain and once
im there then let them find everything out for themselves. If you've
ever read the Burton reports they have added some things. The
>  government of New Zealand is now recognizing arachnoiditis as a
very serious disease and they are helping their people. They went as
far as saying that anyone in their country in need of a myelogram,
epidural injections, etc., are being told of the high risk of
developing arach. They even mentioned how the United States and UK
are still injecting things into peoples spines as if it just routine
and not warning any patient about the risks. Even if they do warn
you its nothing more than having you sign a paper saying you read
all the big fancy words that the average patient doesn't even know
or understand. If I tell anyone I have arachnoiditis they almost
laugh and say what the heck is that? Its a funny name for a horrible
disease. If you say you have cancer everyone goes "aww im so sorry".
At least with cancer you either get better or die.  With this arah,
you get it, no one treats it, it gets worse, you don't die from it
you just have the same pain that cancer patient had
>  but you get the honors of having it the rest of your life. If the
government doesn't ease up on the restrictions they put on doctors
for prescribing pain medications then we will suffer the rest of our
lives. When a doctor is allowed to prescribe 4 pills a day for pain
because thats all they are allowed to because they will be in
trouble then we are all doomed with this stuff. If im legitimately
in pain around the clock the I should be allowed to have medicine
around the clock. So what if we get dependent or addicted. Its a
life long disease with no cure so that means we need medication
every day from now on.  So I am sitting here right now in pain
because some idiot in the government said IM only allowed a certain
amount of medication. Our government needs to wake up. I don't know
how to go about getting it started but I am going to find out. ALL
of us need to swamp the whitehouse with emails telling them we have
a disease and doctors wont treat us. Theres what..over a
>  hundred members here. Well if everyday all of us kept sending an
email eventually they would have to get doctors involved. In 10 days
we'd have over 1000 emails and just keep mulitplying eventually
someone would have to hear us. Better yet start at a lesser scale,
we can send them to the governor  but we all live in different
states and the number of emails won't add up as well as if they were
sent to the same place like the whitehouse. Short and sweet emails.
Like , we have a disease, we are in pain , no one will help us and
we can't believe you would allow this to go on in our country. Even
if we all sent the same email. It would at least get someones
attention and get them involved maybe. Then maybe doctors won't be
so scared to even say the word..ARACHNOIDITIS!!!!
>
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Hello Donna, I am happy to see that your situation has improved. You  mention in your last post about fibromyalgia. I am going to pass along this tip for you. I have been taking vitamine C's, 4,000 mgms a day. It has decreased the pain in my joints. This vitamine is an anti-oxydent. Doing research I discovered that vit c is perfect. As a result of taking this, I have gone off my Fentanyl patch. It has been since January since I stopped. I only take Tylenol threes, twice a day if needed. I am much more active than I used to be. I also stopped taking anti-inflammatory meds. The vit C does the same job but without the gastric problems that anti-inflammatory does. I also purchased a mattress topper made of new space age material, memory foam. It has made a world of difference for AA and spinal stenosis at the cervical area. I attribute this improvement from the mattress topper as a direct result of being able to sleep a good 5 hours straight. I finally rest and sleep soundly, finally. When I get up in the morning, I feel rested as opposed to being exhausted. Also, for years, I have been a convinced individual about alternative therapies. For years now, I have done a gentle colon cleansing and I keep my bowels working daily. The meds that we are prescribed interfere with the natural flow of elimination of waste. Once your bowels are cleansed, then the meds are more efficiently working for you. The same goes for the vitamines I take. So basically, I pretty much got rid of the meds that I was prescribed. I feel better.  I have started taking long walks, I still walk with a cane but nevertheless I am moving. I also work in my garden, a little bit at a time.  I am proud of that. I have also started to lose weight which is a direct result of all of the above.   I finally can say that I am in control of the AA, fybromyalgia and the spinal stenosis. I have made up my mind that I would reach a plateau and will stay there. This belief is anchored within myself. My mind is helping getting better, I am aware of that. And I am much happier as well.  So I wish you this as well as I know by reading your posts you have suffered greatly. If you can find anything in my post that could help you a bit than that would make me very happy indeed. AMitiés Louise  www.arachnoiditiscanada.com

Hello Donna, welcome back, I'm glad you are happy with your decision.
I don't think I could go through another one yet. I just wanted to
let you know what I have just started taking for my Restless leg
Syndrome (RLS) it's called requip. I saw it on the television in a
commercial. My doctor has me take one a day about 3 hours before bed.
I comes in a tablet form. It really helped my legs for sleeping and
at night. Best wishes. Michael in Washington State



--- In Arachnoiditis@yahoogroups.com, "Donna Richnow" <ddrichnow@...>
wrote:
>
> As I stated in my last post, I did have the surgery and am making
> progress with it.  But the depression, fibro, RLS,and thyroid
> problems still exist.  I do see someone about the depression and
> someone else about the RLS and someone else about the thyroid and
> then again someone else for the fibro.  No one seems to be able to
> treat the whole person and that is what seems to get me into
trouble
> with my meds.  I have to be very careful and do what I think is
best
> for me as far as the meds go.  My RLS doctor wants me on methadone,
> the pain doctor for the fibro has me on vicoden and soma, which is
> like candy at times.  I also have prenicious anemia and have had
> several infusions of , duh, can't remember right now.  Talk about a
> fog sometimes!!!I also take Neurontin for the chronic pain.  I was
on
> the fenatol patch, 50 mg. before my surg.  I am now off of that and
> have been able to cut down on some of the other meds.  I know that
> this may be temperory but any meds that I don't have to take right
> now is a blessing.  Sometimes I just have to endure some of the
pain
> from the other stuff so that I can function.  I had a wreck and
have
> run off of the road and almost killed myself trying to do everyday
> things while on meds.  I wish that one doctor knew about all of
these
> problems and could treat the whole me instead of pieces of me.  Not
> only is it expensive but I feel like they are not paying attention
to
> what the other person is prescribing.  I have to watch it myself
very
> carefully and look everything up to make sure that I am not making
> myself worse. Again, a long post, but you people are really the
only
> ones that understand what it is like to have this horrible disease
> plus all of the other things that are wrong and know how hard it is
> to sort them out.  I am even on Apokyn which is an injectable for
my
> RLS when it gets unbearable.  Some of these meds are for Parkinsons
> and I wonder how they will effect me in the long run.  And when we
> run out of options, then what happens.  I know that things will
> change as they always do and I hope that I have some time when
things
> are under control somewhat.  When I look at all of the meds I take
I
> wonder how under control all of this is.  Gosh, my cabinet is full
of
> medicine that would kill some people.  Ginny, you are getting some
> good advice from these people that have been diagnosed a lot longer
> than I have but they had me think of all of these questions myself
> before I could make some decisions for myself.  Good luck to you. 
I
> hope that you find some help that you need. 
> Donna
>

Hello Donna, welcome back, I'm glad you are happy with your decision.
I don't think I could go through another one yet. I just wanted to
let you know what I have just started taking for my Restless leg
Syndrome (RLS) it's called requip. I saw it on the television in a
commercial. My doctor has me take one a day about 3 hours before bed.
I comes in a tablet form. It really helped my legs for sleeping and
at night. Best wishes. Michael in Washington State



--- In Arachnoiditis@yahoogroups.com, "Donna Richnow" <ddrichnow@...>
wrote:
>
> As I stated in my last post, I did have the surgery and am making
> progress with it.  But the depression, fibro, RLS,and thyroid
> problems still exist.  I do see someone about the depression and
> someone else about the RLS and someone else about the thyroid and
> then again someone else for the fibro.  No one seems to be able to
> treat the whole person and that is what seems to get me into
trouble
> with my meds.  I have to be very careful and do what I think is
best
> for me as far as the meds go.  My RLS doctor wants me on methadone,
> the pain doctor for the fibro has me on vicoden and soma, which is
> like candy at times.  I also have prenicious anemia and have had
> several infusions of , duh, can't remember right now.  Talk about a
> fog sometimes!!!I also take Neurontin for the chronic pain.  I was
on
> the fenatol patch, 50 mg. before my surg.  I am now off of that and
> have been able to cut down on some of the other meds.  I know that
> this may be temperory but any meds that I don't have to take right
> now is a blessing.  Sometimes I just have to endure some of the
pain
> from the other stuff so that I can function.  I had a wreck and
have
> run off of the road and almost killed myself trying to do everyday
> things while on meds.  I wish that one doctor knew about all of
these
> problems and could treat the whole me instead of pieces of me.  Not
> only is it expensive but I feel like they are not paying attention
to
> what the other person is prescribing.  I have to watch it myself
very
> carefully and look everything up to make sure that I am not making
> myself worse. Again, a long post, but you people are really the
only
> ones that understand what it is like to have this horrible disease
> plus all of the other things that are wrong and know how hard it is
> to sort them out.  I am even on Apokyn which is an injectable for
my
> RLS when it gets unbearable.  Some of these meds are for Parkinsons
> and I wonder how they will effect me in the long run.  And when we
> run out of options, then what happens.  I know that things will
> change as they always do and I hope that I have some time when
things
> are under control somewhat.  When I look at all of the meds I take
I
> wonder how under control all of this is.  Gosh, my cabinet is full
of
> medicine that would kill some people.  Ginny, you are getting some
> good advice from these people that have been diagnosed a lot longer
> than I have but they had me think of all of these questions myself
> before I could make some decisions for myself.  Good luck to you.
I
> hope that you find some help that you need.
> Donna
>

Hello Donna, welcome back, I'm glad you are happy with your decision.
I don't think I could go through another one yet. I just wanted to
let you know what I have just started taking for my Restless leg
Syndrome (RLS) it's called requip. I saw it on the television in a
commercial. My doctor has me take one a day about 3 hours before bed.
I comes in a tablet form. It really helped my legs for sleeping and
at night. Best wishes. Michael in Washington State



--- In Arachnoiditis@yahoogroups.com, "Donna Richnow" <ddrichnow@...>
wrote:
>
> As I stated in my last post, I did have the surgery and am making
> progress with it.  But the depression, fibro, RLS,and thyroid
> problems still exist.  I do see someone about the depression and
> someone else about the RLS and someone else about the thyroid and
> then again someone else for the fibro.  No one seems to be able to
> treat the whole person and that is what seems to get me into
trouble
> with my meds.  I have to be very careful and do what I think is
best
> for me as far as the meds go.  My RLS doctor wants me on methadone,
> the pain doctor for the fibro has me on vicoden and soma, which is
> like candy at times.  I also have prenicious anemia and have had
> several infusions of , duh, can't remember right now.  Talk about a
> fog sometimes!!!I also take Neurontin for the chronic pain.  I was
on
> the fenatol patch, 50 mg. before my surg.  I am now off of that and
> have been able to cut down on some of the other meds.  I know that
> this may be temperory but any meds that I don't have to take right
> now is a blessing.  Sometimes I just have to endure some of the
pain
> from the other stuff so that I can function.  I had a wreck and
have
> run off of the road and almost killed myself trying to do everyday
> things while on meds.  I wish that one doctor knew about all of
these
> problems and could treat the whole me instead of pieces of me.  Not
> only is it expensive but I feel like they are not paying attention
to
> what the other person is prescribing.  I have to watch it myself
very
> carefully and look everything up to make sure that I am not making
> myself worse. Again, a long post, but you people are really the
only
> ones that understand what it is like to have this horrible disease
> plus all of the other things that are wrong and know how hard it is
> to sort them out.  I am even on Apokyn which is an injectable for
my
> RLS when it gets unbearable.  Some of these meds are for Parkinsons
> and I wonder how they will effect me in the long run.  And when we
> run out of options, then what happens.  I know that things will
> change as they always do and I hope that I have some time when
things
> are under control somewhat.  When I look at all of the meds I take
I
> wonder how under control all of this is.  Gosh, my cabinet is full
of
> medicine that would kill some people.  Ginny, you are getting some
> good advice from these people that have been diagnosed a lot longer
> than I have but they had me think of all of these questions myself
> before I could make some decisions for myself.  Good luck to you.
I
> hope that you find some help that you need.
> Donna
>

As I stated in my last post, I did have the surgery and am making
progress with it.  But the depression, fibro, RLS,and thyroid
problems still exist.  I do see someone about the depression and
someone else about the RLS and someone else about the thyroid and
then again someone else for the fibro.  No one seems to be able to
treat the whole person and that is what seems to get me into trouble
with my meds.  I have to be very careful and do what I think is best
for me as far as the meds go.  My RLS doctor wants me on methadone,
the pain doctor for the fibro has me on vicoden and soma, which is
like candy at times.  I also have prenicious anemia and have had
several infusions of , duh, can't remember right now.  Talk about a
fog sometimes!!!I also take Neurontin for the chronic pain.  I was on
the fenatol patch, 50 mg. before my surg.  I am now off of that and
have been able to cut down on some of the other meds.  I know that
this may be temperory but any meds that I don't have to take right
now is a blessing.  Sometimes I just have to endure some of the pain
from the other stuff so that I can function.  I had a wreck and have
run off of the road and almost killed myself trying to do everyday
things while on meds.  I wish that one doctor knew about all of these
problems and could treat the whole me instead of pieces of me.  Not
only is it expensive but I feel like they are not paying attention to
what the other person is prescribing.  I have to watch it myself very
carefully and look everything up to make sure that I am not making
myself worse. Again, a long post, but you people are really the only
ones that understand what it is like to have this horrible disease
plus all of the other things that are wrong and know how hard it is
to sort them out.  I am even on Apokyn which is an injectable for my
RLS when it gets unbearable.  Some of these meds are for Parkinsons
and I wonder how they will effect me in the long run.  And when we
run out of options, then what happens.  I know that things will
change as they always do and I hope that I have some time when things
are under control somewhat.  When I look at all of the meds I take I
wonder how under control all of this is.  Gosh, my cabinet is full of
medicine that would kill some people.  Ginny, you are getting some
good advice from these people that have been diagnosed a lot longer
than I have but they had me think of all of these questions myself
before I could make some decisions for myself.  Good luck to you.  I
hope that you find some help that you need.
Donna

Anisa,
You posted a reply that really helped me a couple of months ago. I
went ahead and had the spinal fusion that the doctor recommended.  I
know that it has only been a couple of months but I already feel so
much better.  Even my family has noticed the difference.  I know that
AA may come back to haunt me and I still have some of the symptoms of
it, but I am working on them.  I just had to quit posting because I
was getting confused with all of the information that I received.  I
had to make a decision and right now, I am glad that I went ahead
with it.  I have several x-rays and so far so good.  Because he was
aware of the AA he took so many precautions to prevent it from
getting worse.  Only time will tell.  I still have the shooting pain
in my feet and I am having the bowel problems that I had before
including the bladder problems but they are worse.  I just read about
the flaxseed and I am going to try it.  I am trying to keep active,
sometimes doing more than I should , but am doing as I'm told.  Thank
you so much for telling me to go with what I belive to be the right
thing.  He said that it was a mess and that even though I have the AA
that this was causing me considerable pain and the only way to fix
that problem was to have the surgery.  I am off so many of my pain
meds now, that I can actually think like a real person.  Just hope
and pray that it continues that way.  Any relief was better than what
I was going through.  But I do have a great pain specialist that
understands AA and is willing to help when and if the time comes that
I need intervention.  Thanks for the advice.  I would tell anyone to
go with your instincts.  Only you know what you are willing to
endure, and what you think will be right for you.
Donna

----- Original Message -----

From: rucastle_ginny

To: Arachnoiditis@yahoogroups.com

Sent: Wednesday, March 15, 2006 4:46 PM

Subject: [Arachnoiditis] Hi there,I'm a new member

Hello,my name's Ginny and I've just found this sight.I'm 57,had AA
and Fibromyalgia since 86,but wasn't diagnosed with the Arach till
91.I' 2000 I had a stroke which affected my right side.Since then
I've managed to get my speech and reading back to normal(more or
less!)and I use my stick now but use my wheelchair for outings or
when I get really tired.I have a Doctor,my 3rd since coming to live
here in 95,who readilly admits he doesn't know anything about
AA,Ieven gave him the paper by Dr sarah Smith,which he read and said
that what it all boiled down to was thinking possitive and keeping
going!!I feel I've done this since 86,but recently things have been
happening and my Doc just prescribes Morphine or Tramadol,which I
just have to ask for,and thats it!My feet and legs are really
painfull now ,I keep getting "trapped nerves "in my groin and
knees,at least that's what the Doc thinks it is but won't say it's
because of the AA because he just doesn't know.So I've decided I'm
going to have to find out for myself if there is some way I can find
a pain doctor in my area,I just wan't to find out what's happening
to my body.My husband Richard,whos been with me now for 33 years is
great but feels so frustrated that I can't get anywhere with finding
help.We also have his 91 year old father living with us since 03 and
he's been diagnosed with Dementia and is also Incontinent!so we have
our hands full.Richard was made redundant after 41 years in october
04 and has lost most of his pension beacause the firm he worked for
went into receivership!like a lot of people we're waiting to see if
it's going to the European courts,hopefully he may get some of what
he paid infor 37 years back!He's had 3 benign tumours removed from
his sinusis in the last 3 years,they're quite unusual and have been
sent to Harvard medical centre,he'll probably develop more and a
close eye is being kept on him.He managed to get another job last
year,but,because he's 59 has had to take a big drop in salary,half
of what he was on,but like a lot of people we're ok and have one
thing that keeps us going and that's our sence of humour!we always
try and see things from a humourous angle,even when his dad is
having a day whaen he's totaly confused and getting dressed then 30
minutes later undressing again!Richard will look at me and say "Oh
Oh it's one flew over the cuckoos nest today"!Anyway that's me ,hope
I haven't rambled too much,I'm looking forward to joining in with
the group and hope I can be of help too.Take care,love Ginnyxx  

Does anyone remember who posted a message and in it was something about
their fingers hurting and the doctor said maybe it was gout? I can
hardly use my left hand now. It started out with my middle finger
almost locking and if you press on it it feels bruised then not long
ago the next finger started doing it and now in my baby finger. I am
typing with two fingers. Does anyone else have this problem starting?
The palms of my hands hurt also and the bottoms of my feet. Not the
burning pain its like a sore bruised feeling when I walk or put any
pressure on my palms. One knee is getting close to being like that
also. I know with arach alot of wierd symptoms pop up out of nowhere
and I could have arthritis or who knows but I was reading someones
message and it was similar to what IM talking about.  Karen

Hello Ginny, my name is Michael and I would like to welcome you to
the group. It sounds like you have been dealing with this condition
about as long as I have. I had my first spinal surgery a Steffee
plate fusion at L5-S1 in 1991, I was 35. The fusion never worked and
I ended up with a failed back fusion. Since then I have had 4 more
Back surgeries and one of those was another spinal fusion with
hardware. I had my last Surgery in 1999. I had all the hardware that
was in me removed. I'm hoping that my body will heal itself one day,
or one year now. I don't know how long it will take but I have the
rest of my life to try and get better. It may take 10-20 years since
my last surgery to get better. But, I think my chances of healing
will be a lot better without all the hardware in me. I wish you well.
Sincerely Michael in Washington State


--- In Arachnoiditis@yahoogroups.com, "rucastle_ginny"
<ginny_richard@...> wrote:
>
> Hello,my name's Ginny and I've just found this sight.I'm 57,had AA
> and Fibromyalgia since 86,but wasn't diagnosed with the Arach till
> 91.I' 2000 I had a stroke which affected my right side.Since then
> I've managed to get my speech and reading back to normal(more or
> less!)and I use my stick now but use my wheelchair for outings or
> when I get really tired.I have a Doctor,my 3rd since coming to live
> here in 95,who readilly admits he doesn't know anything about
> AA,Ieven gave him the paper by Dr sarah Smith,which he read and
said
> that what it all boiled down to was thinking possitive and keeping
> going!!I feel I've done this since 86,but recently things have been
> happening and my Doc just prescribes Morphine or Tramadol,which I
> just have to ask for,and thats it!My feet and legs are really
> painfull now ,I keep getting "trapped nerves "in my groin and
> knees,at least that's what the Doc thinks it is but won't say it's
> because of the AA because he just doesn't know.So I've decided I'm
> going to have to find out for myself if there is some way I can
find
> a pain doctor in my area,I just wan't to find out what's happening
> to my body.My husband Richard,whos been with me now for 33 years is
> great but feels so frustrated that I can't get anywhere with
finding
> help.We also have his 91 year old father living with us since 03
and
> he's been diagnosed with Dementia and is also Incontinent!so we
have
> our hands full.Richard was made redundant after 41 years in october
> 04 and has lost most of his pension beacause the firm he worked for
> went into receivership!like a lot of people we're waiting to see if
> it's going to the European courts,hopefully he may get some of what
> he paid infor 37 years back!He's had 3 benign tumours removed from
> his sinusis in the last 3 years,they're quite unusual and have been
> sent to Harvard medical centre,he'll probably develop more and a
> close eye is being kept on him.He managed to get another job last
> year,but,because he's 59 has had to take a big drop in salary,half
> of what he was on,but like a lot of people we're ok and have one
> thing that keeps us going and that's our sence of humour!we always
> try and see things from a humourous angle,even when his dad is
> having a day whaen he's totaly confused and getting dressed then 30
> minutes later undressing again!Richard will look at me and say "Oh
> Oh it's one flew over the cuckoos nest today"!Anyway that's
me ,hope
> I haven't rambled too much,I'm looking forward to joining in with
> the group and hope I can be of help too.Take care,love Ginnyxx
>

Hello,my name's Ginny and I've just found this sight.I'm 57,had AA
and Fibromyalgia since 86,but wasn't diagnosed with the Arach till
91.I' 2000 I had a stroke which affected my right side.Since then
I've managed to get my speech and reading back to normal(more or
less!)and I use my stick now but use my wheelchair for outings or
when I get really tired.I have a Doctor,my 3rd since coming to live
here in 95,who readilly admits he doesn't know anything about
AA,Ieven gave him the paper by Dr sarah Smith,which he read and said
that what it all boiled down to was thinking possitive and keeping
going!!I feel I've done this since 86,but recently things have been
happening and my Doc just prescribes Morphine or Tramadol,which I
just have to ask for,and thats it!My feet and legs are really
painfull now ,I keep getting "trapped nerves "in my groin and
knees,at least that's what the Doc thinks it is but won't say it's
because of the AA because he just doesn't know.So I've decided I'm
going to have to find out for myself if there is some way I can find
a pain doctor in my area,I just wan't to find out what's happening
to my body.My husband Richard,whos been with me now for 33 years is
great but feels so frustrated that I can't get anywhere with finding
help.We also have his 91 year old father living with us since 03 and
he's been diagnosed with Dementia and is also Incontinent!so we have
our hands full.Richard was made redundant after 41 years in october
04 and has lost most of his pension beacause the firm he worked for
went into receivership!like a lot of people we're waiting to see if
it's going to the European courts,hopefully he may get some of what
he paid infor 37 years back!He's had 3 benign tumours removed from
his sinusis in the last 3 years,they're quite unusual and have been
sent to Harvard medical centre,he'll probably develop more and a
close eye is being kept on him.He managed to get another job last
year,but,because he's 59 has had to take a big drop in salary,half
of what he was on,but like a lot of people we're ok and have one
thing that keeps us going and that's our sence of humour!we always
try and see things from a humourous angle,even when his dad is
having a day whaen he's totaly confused and getting dressed then 30
minutes later undressing again!Richard will look at me and say "Oh
Oh it's one flew over the cuckoos nest today"!Anyway that's me ,hope
I haven't rambled too much,I'm looking forward to joining in with
the group and hope I can be of help too.Take care,love Ginnyxx

--- In Arachnoiditis@yahoogroups.com, "Lady Alexandra"
<txcat369@...> wrote:Hell Alex I am new to this board.
I am glad I read your message because I thought I was all
alone.Everything you describe I have it also.I was diagnose with arc
last year March.

First let me explain i live in Nassau Bahamas and here we have a
limited amount of specialist and 99% of them never heard of arc.I am
so mad with my pcp because I had an mri in fla.last year March that
showed I had arc
and when he said the result all he said was I have scared tissues
and a lot of nerve clumping.I have had three back operations over
the past twelve yrs.at L4/L5 S1. The last operation was three yrs.
ago with hardware inserted thats when most of my pain started.Over
the past several months i started having leg pains crawling skin
shocks
tooth achs weak bladder and bowel pain in my joints prickel feeling
at the bottom of my feet my toes hurt alot leg cramps and so.My
doctor told me i need to do sit ups and
walk alot i did just that seven months and has to use a walking cane
now. I was told by the doctor in fla. the only exercise that i
should is in a pool or at the beach nothing with impact.I would
really like if u e-mail me so we can exchange more info of arc u can
get
my e-mail address of my profile.
marilyn.
>
> Just another HUGE Thank You to the entire group for all of your
> helpful comments and suggestions!  Now know why my neuro is
treating
> me like a leper... He isnt looking at me as a whole person or even
my
> MRIs.  He is only looking for MS, which makes sense, he is the
lead
> research doc on the T-cell vaccination study for MS.  He wants the
> vaccine to show progress on MS symptoms. Then I come along with a
> bunch of new symptoms, that "aren't MS", but he refuses to help me.
> I am probably labeled as one of 'those' patients who look things
up
> on the internet, trying to find another disease to be stricken
with.
> From now on, when I go to him, nothing but MS will come out of my
> mouth. Last year the dx me with Fibromyalgia only b/c they couldnt
> explain this weird pains I was having.  But that label didn't take
> into acct why my finger joint ached and my big toe joints were
> painful to the touch. He suggested gout... I never eat ANY thing
on
> the gout list and I hate salt.  So, I thank all of you brave souls
> out there living with this disease.  Just remember that up until
the
> early 1900's, MS wasn't a recognized disease.  Most patients were
> sent insane assylums(?). Before that they were kicked out of there
> homes and driven away from families b/c they were possessed by
evil
> spirits.  So there is hope that one day soon the medical community
> will recogize ARC as a true disease!!  THANK YOU ALL SO MUCH!!!
> Alex
>
>
> --- In Arachnoiditis@yahoogroups.com, "M. Victoria Zilleruelo"
> <mvzilleruelo@> wrote:
> >
> > Hello Alex:  with all of your symptoms, I agree with Anisa and
you
> must be very brave to have the inspiration to write and describe
all
> of them, not to mention the agony you must suffer just to type.  I
> can recommend one easy solution for your bowels and is to go to
the
> Fruit and Veggie Market and get some fresh dried Flaxseed, then
place
> about half a cup to a cup on your blender (dry) and pulverize it,
> then make yourself a sandwich with smooth peanut butter (this is
the
> way I eat it and it tastes like nuts), (or marmalade, jelly, or
> whatever you like, I even use it as salad topping) on a piece of
> multigrain toast and in between place one teaspoon full of
pulverized
> flaxseeds for every 125 lbs of weight.  I promise you that in a
week
> you will see your motor running a lot better and this gives you
Omega
> 6 fatty Acids as well as oils your joints, makes your hair, nails
and
> skin look really soft, smooth and shiny respectively.  Please try
it,
> I agonized with my bowels for a
> >  long time and the Flaxseed is way better than any laxative, I
am
> sure you will appreciate having a painless bowel movement.
> >
> > Anisa has great and REAL solutions for you to finally get
> diagnosed.  Though I know for a fact that doctors KNOW what
> Arachnoiditis is, but THE miserables SOB's want to keep it hush-
hush
> so that no legal action is taken against them.  This also will
change
> with time.
> >
> > Your idea of Montel Williams is a great idea, perhaps we should
> compose a letter and get everyone to sign it and send it with a
> return receipt?
> >
> > Praying for you and hoping we have been of some help to you.
> >
> > Best regards,
> >
> > Victoria
> >
> > ----- Original Message ----
> > From: Anisa Benson <anisaslollys@>
> > To: Arachnoiditis@yahoogroups.com
> > Sent: Wednesday, March 1, 2006 3:59:15 AM
> > Subject: Re: [Arachnoiditis] Alex's Update
> >
> >
> > Hi Alex,
> > I am not a doctor, but from what you are describing, it sounds
> similar to alot of my symptoms.  I would say that you have both.
If
> the leisons are there to confirm that you have MS and you have
some
> symptoms of that, then that is one diagnosis.  If you had your L4-
L5
> fusion and that area also controls the bowels and bladder and with
> the insects crawling feeling, prickly feet, electric shock
feeling,
> then those are all symptoms from your L4-L5 surgery.  You could
have
> the start of arachnoiditis.
> > Arachnoiditis is caused by adhesions from any type of back
> surgery.  when the mylen sheath is cut during surgery or if it is
> affected by some type of injury, that is when more symptoms can
> occur.  What happens is that adhesions  form with the healing
> process. It is the adhesions that block off the nerve endings that
> cause the pains and sensations.  Also, with you endometrosis
> problems, that is very painful.  If they went in and did a D& C in
> which the dilated and curettage your uterus to scape all that out
> that will be sensitive and painful for some time also.  Remember,
> tissue and nerves take a long time to heal, if they are going to
> heal.  If they are being constantly disturbed by a blockage of
> adhesions, than that is what the ongoing process is of the
> arachnoiditis.  Your symptoms and pains are very real.  You need
to
> do some research on this info and print it out.
> > When you or any of you out there approach a physician about your
> problems, do not use the word arachnoiditis.  Explain only the
> symptoms and problems that you are having.  When you take a copy
of
> your MRI to the doctor and even though it says arc on it, play
dumb.
> Ask the doctor what this arachnoiditis is on your MRI and let him
> tell you what it is.  Ask him if any of your described symptoms
could
> come from arc.  Let him tell you what he thinks.  That way, you
will
> know if you have a good physician or not.
> > Another thing, the insurance companies may not recognize the arc
as
> a direct diagnosis, so the doctor won't get much of a re-
embersment
> from the insurance company.  If you explain your symptoms, that
can
> be billed individually with every symptom and the doctor can
collect
> more from the insurance company, plus he has your symptoms charted
> and can follow along if you have any changes.  It is complicated
out
> there and they way the whole system works.  I worked with the
system
> for 14 + years and I understand the way it works.  I used to
> challenge the insurance company for more money and to help the
> patient out honesty by billing for as many symptoms as possible.
The
> medical field has changed today, and the offices doing the billing
> will only bill from what is put on the charts from what you tell
the
> doctor.  Do you understand what I am trying to say?
> > Now, the part that gets more complicated and hard to believe.
Like
> I said, I have almost all of your symptoms except for the
abdonimal
> pains and the incontenence.  My left side goes down on my once a
> month.  But, I am not on any type of laxatives anymore.  I don't
have
> the symptoms of bugs crawling, pain, abdominal discomforts ect...
as
> long as I am on my magnets and wellness products.  I can function
> during the day.
> > All of that is another chapter of information if you are
> interested, let me know and you and anyone else can email me
separate
> for information.
> > I hope this has helped you out.  Like I said, I believe you have
> diagnosis going on at the same time which makes it very
complicated
> and they both inter act with each other.  I also would suggest
that
> you get your B12 levels check to make sure you are not anemic and
> instead of them suggesting diabetis, I would see if you have
> hypoglycemia.  The anemia and hypoglycemia would cause you to
black
> out and give you some of you other feelings as well.
> > Please let me know what you think.  I know this is alot to
> understand, but I am here to help you if you have any questions.
> > Take Care and God Bless,
> > Have a nice day,
> > Anisa
> >
> > Lady Alexandra <txcat369@> wrote:
> > Thank you to everyone for being so wonderfully supportive!! Here
is
> > my story. I dont know if this will answer Anisa's Qs, but maybe
it
> > will be a starting point. I was dx w MS 11 yrs ago & have lots
of
> > brain lessions. Most of the MS probs have been vision related,
> > vertigo, and ataxia. (All which can be ARC symptoms from what I
am
> > learning) But, for the entire time that I have had MS, I have
had
> > these other problems that the doctors basically ignored, just
> > stating, "That's not a symptom of MS."  I am not looking for
pills
> > either!!  In fact I just had surgery, and they gave me Vicoden
500
> mg
> > and Phenegrin, and I only took it the night after surgery. I
hate
> the
> > dopey feeling.  Anyway, my other symptoms have and are: My blood
> > pressure just drops so low that I am blacking out when I stand
up.
> > This just started 1-1/2 years ago, after the chiropractor
cracked
> my
> > L4/L5 fusion. I have always had this electric shock sensation,
> > especially when I am trying to sleep. It gets so bad that I end
up
> on
> > the couch watching tv. I also have this constant sensation that
a
> bug
> > is on me. Like an ant or a spider. Which totally freaks me out!
I
> > jump up and shake off my clothes looking for said insect,
nothing.
> > Then, the prickily feet thing, like when your feet go to sleep
but
> 10
> > times worse. I actually went to the hospital about this one.
The
> > neurologist on call flat out told me that it wasn't related to
MS
> and
> > I might have diabetes. Not. They ended up admitting me and
giving
> me
> > IV steroids b/c my old neuro said it was close enough to summer
> time
> > and it would help my MS. There is this constant pain in my groin
> > area. That is what the surgery was for. To see if they could
find
> any
> > reason for it. They did find that I have endometriosis(?), so
they
> > clean it all up.  But, the pain is still there.  Then, my
bowels,
> > they have stopped working. My neuro tells me that if it was MS,
I
> > would loose control of my bowels. I used to be able to set a
clock
> to
> > them. I went to a gastro, had an xray, called him today, he said
I
> > have a "total impaction".  He called in some stuff for me to
try,
> we
> > will see.  My bladder also has issues all it's own.  But, not
the
> > typical MS incontinence, it is like I have to go, then I cant
seem
> to
> > go, then when I do it burns. I go in for a UTI test, negative.
> Then,
> > there is the sex thing... sometimes it works and sometimes
> absolutely
> > nothing. My Q is could someone who has MS who had L4/L5 back
> surgery
> > and tons of MRI with contrasting dye also develop
Arachnoiditis???
> > Could anyone, please ask their doctor this Q?!?  My neurologist
has
> > now turned on me, and is not only ignoring my pain & probs, but
> also
> > my attempts to help figure out what is causing all these other
non-
> MS
> > symptoms. I do NOT know the boundaries for the neuro, or primary
> when
> > dealing with ARC. But, I feel like I did when I was trying to
> figure
> > out what was wrong with me before the MS was mentioned.  The
> doctors
> > just looking at me like I am some whinner, some faker, some
> > hypochondriac... I am really slipping into a bad place.
> > But, if anyone does find out about MS and ARC, try Montel
Williams.
> > Since he has MS, he might be especially receptive.  Sorry this
is
> so
> > long... Thanks for listening to my story and for any advice.
> > Alex
> >
> > --- In Arachnoiditis@yahoogroups.com, Anisa Benson
<anisaslollys@>
> > wrote:
> > >
> > > Dear Alex,
> > >   Do you understand what arachnoiditis is?  And do you know
what
> > causes arachnoiditis?
> > >   Also, do you understand the boundries of neurologists,
> > neurosurgeons, and your primary care physician?
> > >   And, have you been diagnosed or have had MRI's or x-rays or
any
> > kind of tests to go along with your symptoms?
> > >   Do you have any MS leisons anywhere?
> > >   I am just a little confused with you email and I am not sure
> you
> > understand the answers to my questions.
> > >   Let me know and then let's talk about it.  Maybe it will
help
> you
> > clear up some confusion since you have similiar symptoms for
both
> MS
> > and ark that has been misdiagnosed in the past.
> > >   Also, at this point, I would not let anyone touch your back
for
> > whatever reason.
> > >   Have a good day,
> > >   Anisa
> > >
> > > Lady Alexandra <txcat369@> wrote:
> > >   What type of doctor should I be going to??  My MS doc, a
> > neurologist,
> > > has been almost unhelpful!  I have been having these problems
> that
> > he
> > > just states "That's not MS".  Ok, your'e a neurologist, help
me!
> > > After I went to that darn Chiropractor, my symptoms
intensified
> and
> > I
> > > developed new symptoms.  The pain is pretty bad too. My neuro
> isn't
> > > one to give ANYTHING for pain or sleep for that matter.  What
is
> it
> > > about back massages that are bad for Arc??  I had one a few
> months
> > > back and had to stay in bed for 3 days??  I really need
everyones
> > > suggestions.  I am lost and I dont know where to start.  I did
> look
> > up
> > > the book that Anissa suggested.  There are tons of symptoms
that
> I
> > > have had for years that "aren't MS" but, no one will help me.
> Any
> > > information on doctors would be greatly appreciated.
> > > Thanks,
> > > Alex
> > >
> > >
> > >
> > >
> > >
> > >
> > >   SPONSORED LINKS
> > >         Health and wellness   Health wellness product   Health
> and
> > wellness program     Diet fitness health nutrition wellness
> Health
> > promotion and wellness   Business health wellness
> > >
> > > ---------------------------------
> > >   YAHOO! GROUPS LINKS
> > >
> > >
> > >     Visit your group "Arachnoiditis" on the web.
> > >
> > >     To unsubscribe from this group, send an email to:
> > >  Arachnoiditis-unsubscribe@yahoogroups.com
> > >
> > >     Your use of Yahoo! Groups is subject to the Yahoo! Terms
of
> > Service.
> > >
> > >
> > > ---------------------------------
> > >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> > SPONSORED LINKS
> > Health and wellness Health wellness product Health and wellness
> program
> > Diet fitness health nutrition wellness Health promotion and
> wellness Womens health and wellness
> >
> >
> >
> >
> >
> > YAHOO! GROUPS LINKS
> >
> >
> >  Visit your group "Arachnoiditis" on the web.
> >
> >  To unsubscribe from this group, send an email to:
> >  Arachnoiditis-unsubscribe@yahoogroups.com
> >
> >  Your use of Yahoo! Groups is subject to the Yahoo! Terms of
> Service.
> >
>

----- Original Message -----

From: Anisa Benson

To: Arachnoiditis@yahoogroups.com

Sent: Friday, March 03, 2006 8:24 PM

Subject: Re: [Arachnoiditis] Big Thank You!!!

Hello Alex and the whole group,

Now lets talk about this.  Now that Alex is feeling better about what is going on and understanding more about her symptoms and possible having arc and maybe MS or a combination of both, where does she go from here? First off, if your doctor has to guess about gout, just have him send you for bloodwork and have a uric acid done.  That will tell you if you have gout or not.  My guess is what you might need to do is to put down on paper your MS symptoms on one side of a column and your arc symptoms on another side of a column. And the next time you go and see this doctor have him see the difference in symptoms.  He may be more of a visual type person, plus he can keep that in your file.  Make sure you have a copy for yourself.

If he is guessing at least you have him thinking and perplexed. That is good, because now you don't let up on him.  You make sure he hears what you are saying without him allowing to call you crazy.  I would even tell him that someone was telling you of a condition called arachnoiditis and you did some research on it and it seems that you have some of the same symptoms.  Ask him what he thinks about it and if he knows anything about it. And, then ask him, maybe he needs to refer you to a neurologist that knows of this condition that would be willing to work with you on it.  AND you don't want a pain doctor.  Fibromyalgia is such a broad diagnosis and it is used for everything when a diagnosis can't be made correctly. 

But, you now have to start and think on what your next move is going to be.

Okay everyone, lets open this up for discussion.  What do the rest of you think?

Have a good evening,

Anisa

Lady Alexandra <txcat369@...> wrote:

Just another HUGE Thank You to the entire group for all of your
helpful comments and suggestions!  Now know why my neuro is treating
me like a leper... He isnt looking at me as a whole person or even my
MRIs.  He is only looking for MS, which makes sense, he is the lead
research doc on the T-cell vaccination study for MS.  He wants the
vaccine to show progress on MS symptoms. Then I come along with a
bunch of new symptoms, that "aren't MS", but he refuses to help me.
I am probably labeled as one of 'those' patients who look things up
on the internet, trying to find another disease to be stricken with.
From now on, when I go to him, nothing but MS will come out of my
mouth. Last year the dx me with Fibromyalgia only b/c they couldnt
explain this weird pains I was having.  But that label didn't take
into acct why my finger joint ached and my big toe joints were
painful to the touch. He suggested gout... I never eat ANY thing on
the gout list and I hate salt.  So, I thank all of you brave souls
out there living with this disease.  Just remember that up until the
early 1900's, MS wasn't a recognized disease.  Most patients were
sent insane assylums(?). Before that they were kicked out of there
homes and driven away from families b/c they were possessed by evil
spirits.  So there is hope that one day soon the medical community
will recogize ARC as a true disease!!  THANK YOU ALL SO MUCH!!!
Alex


--- In Arachnoiditis@yahoogroups.com, "M. Victoria Zilleruelo"
<mvzilleruelo@...> wrote:
>
> Hello Alex:  with all of your symptoms, I agree with Anisa and you
must be very brave to have the inspiration to write and describe all
of them, not to mention the agony you must suffer just to type.  I
can recommend one easy solution for your bowels and is to go to the
Fruit and Veggie Market and get some fresh dried Flaxseed, then place
about half a cup to a cup on your blender (dry) and pulverize it,
then make yourself a sandwich with smooth peanut butter (this is the
way I eat it and it tastes like nuts), (or marmalade, jelly, or
whatever you like, I even use it as salad topping) on a piece of
multigrain toast and in between place one teaspoon full of pulverized
flaxseeds for every 125 lbs of weight.  I promise you that in a week
you will see your motor running a lot better and this gives you Omega
6 fatty Acids as well as oils your joints, makes your hair, nails and
skin look really soft, smooth and shiny respectively.  Please try it,
I agonized with my bowels for a
>  long time and the Flaxseed is way better than any laxative, I am
sure you will appreciate having a painless bowel movement.
> 
> Anisa has great and REAL solutions for you to finally get
diagnosed.  Though I know for a fact that doctors KNOW what
Arachnoiditis is, but THE miserables SOB's want to keep it hush-hush
so that no legal action is taken against them.  This also will change
with time.
> 
> Your idea of Montel Williams is a great idea, perhaps we should
compose a letter and get everyone to sign it and send it with a
return receipt?
> 
> Praying for you and hoping we have been of some help to you.
> 
> Best regards,
> 
> Victoria
>
> ----- Original Message ----
> From: Anisa Benson <anisaslollys@...>
> To: Arachnoiditis@yahoogroups.com
> Sent: Wednesday, March 1, 2006 3:59:15 AM
> Subject: Re: [Arachnoiditis] Alex's Update
>
>
> Hi Alex,
> I am not a doctor, but from what you are describing, it sounds
similar to alot of my symptoms.  I would say that you have both.  If
the leisons are there to confirm that you have MS and you have some
symptoms of that, then that is one diagnosis.  If you had your L4-L5
fusion and that area also controls the bowels and bladder and with
the insects crawling feeling, prickly feet, electric shock feeling,
then those are all symptoms from your L4-L5 surgery.  You could have
the start of arachnoiditis.
> Arachnoiditis is caused by adhesions from any type of back
surgery.  when the mylen sheath is cut during surgery or if it is
affected by some type of injury, that is when more symptoms can
occur.  What happens is that adhesions  form with the healing
process. It is the adhesions that block off the nerve endings that
cause the pains and sensations.  Also, with you endometrosis
problems, that is very painful.  If they went in and did a D& C in
which the dilated and curettage your uterus to scape all that out
that will be sensitive and painful for some time also.  Remember,
tissue and nerves take a long time to heal, if they are going to
heal.  If they are being constantly disturbed by a blockage of
adhesions, than that is what the ongoing process is of the
arachnoiditis.  Your symptoms and pains are very real.  You need to
do some research on this info and print it out.
> When you or any of you out there approach a physician about your
problems, do not use the word arachnoiditis.  Explain only the
symptoms and problems that you are having.  When you take a copy of
your MRI to the doctor and even though it says arc on it, play dumb. 
Ask the doctor what this arachnoiditis is on your MRI and let him
tell you what it is.  Ask him if any of your described symptoms could
come from arc.  Let him tell you what he thinks.  That way, you will
know if you have a good physician or not.
> Another thing, the insurance companies may not recognize the arc as
a direct diagnosis, so the doctor won't get much of a re-embersment
from the insurance company.  If you explain your symptoms, that can
be billed individually with every symptom and the doctor can collect
more from the insurance company, plus he has your symptoms charted
and can follow along if you have any changes.  It is complicated out
there and they way the whole system works.  I worked with the system
for 14 + years and I understand the way it works.  I used to
challenge the insurance company for more money and to help the
patient out honesty by billing for as many symptoms as possible.  The
medical field has changed today, and the offices doing the billing
will only bill from what is put on the charts from what you tell the
doctor.  Do you understand what I am trying to say?
> Now, the part that gets more complicated and hard to believe.  Like
I said, I have almost all of your symptoms except for the abdonimal
pains and the incontenence.  My left side goes down on my once a
month.  But, I am not on any type of laxatives anymore.  I don't have
the symptoms of bugs crawling, pain, abdominal discomforts ect... as
long as I am on my magnets and wellness products.  I can function
during the day.
> All of that is another chapter of information if you are
interested, let me know and you and anyone else can email me separate
for information.
> I hope this has helped you out.  Like I said, I believe you have
diagnosis going on at the same time which makes it very complicated
and they both inter act with each other.  I also would suggest that
you get your B12 levels check to make sure you are not anemic and
instead of them suggesting diabetis, I would see if you have
hypoglycemia.  The anemia and hypoglycemia would cause you to black
out and give you some of you other feelings as well.
> Please let me know what you think.  I know this is alot to
understand, but I am here to help you if you have any questions.
> Take Care and God Bless,
> Have a nice day,
> Anisa
>
> Lady Alexandra <txcat369@...> wrote:
> Thank you to everyone for being so wonderfully supportive!! Here is
> my story. I dont know if this will answer Anisa's Qs, but maybe it
> will be a starting point. I was dx w MS 11 yrs ago & have lots of
> brain lessions. Most of the MS probs have been vision related,
> vertigo, and ataxia. (All which can be ARC symptoms from what I am
> learning) But, for the entire time that I have had MS, I have had
> these other problems that the doctors basically ignored, just
> stating, "That's not a symptom of MS."  I am not looking for pills
> either!!  In fact I just had surgery, and they gave me Vicoden 500
mg
> and Phenegrin, and I only took it the night after surgery. I hate
the
> dopey feeling.  Anyway, my other symptoms have and are: My blood
> pressure just drops so low that I am blacking out when I stand up.
> This just started 1-1/2 years ago, after the chiropractor cracked
my
> L4/L5 fusion. I have always had this electric shock sensation,
> especially when I am trying to sleep. It gets so bad that I end up
on
> the couch watching tv. I also have this constant sensation that a
bug
> is on me. Like an ant or a spider. Which totally freaks me out! I
> jump up and shake off my clothes looking for said insect, nothing.
> Then, the prickily feet thing, like when your feet go to sleep but
10
> times worse. I actually went to the hospital about this one.  The
> neurologist on call flat out told me that it wasn't related to MS
and
> I might have diabetes. Not. They ended up admitting me and giving
me
> IV steroids b/c my old neuro said it was close enough to summer
time
> and it would help my MS. There is this constant pain in my groin
> area. That is what the surgery was for. To see if they could find
any
> reason for it. They did find that I have endometriosis(?), so they
> clean it all up.  But, the pain is still there.  Then, my bowels,
> they have stopped working. My neuro tells me that if it was MS, I
> would loose control of my bowels. I used to be able to set a clock
to
> them. I went to a gastro, had an xray, called him today, he said I
> have a "total impaction".  He called in some stuff for me to try,
we
> will see.  My bladder also has issues all it's own.  But, not the
> typical MS incontinence, it is like I have to go, then I cant seem
to
> go, then when I do it burns. I go in for a UTI test, negative. 
Then,
> there is the sex thing... sometimes it works and sometimes
absolutely
> nothing. My Q is could someone who has MS who had L4/L5 back
surgery
> and tons of MRI with contrasting dye also develop Arachnoiditis??? 
> Could anyone, please ask their doctor this Q?!?  My neurologist has
> now turned on me, and is not only ignoring my pain & probs, but
also
> my attempts to help figure out what is causing all these other non-
MS
> symptoms. I do NOT know the boundaries for the neuro, or primary
when
> dealing with ARC. But, I feel like I did when I was trying to
figure
> out what was wrong with me before the MS was mentioned.  The
doctors
> just looking at me like I am some whinner, some faker, some
> hypochondriac... I am really slipping into a bad place.
> But, if anyone does find out about MS and ARC, try Montel Williams.
> Since he has MS, he might be especially receptive.  Sorry this is
so
> long... Thanks for listening to my story and for any advice.
> Alex
>
> --- In Arachnoiditis@yahoogroups.com, Anisa Benson <anisaslollys@>
> wrote:
> >
> > Dear Alex,
> >   Do you understand what arachnoiditis is?  And do you know what
> causes arachnoiditis?
> >   Also, do you understand the boundries of neurologists,
> neurosurgeons, and your primary care physician?
> >   And, have you been diagnosed or have had MRI's or x-rays or any
> kind of tests to go along with your symptoms?
> >   Do you have any MS leisons anywhere?
> >   I am just a little confused with you email and I am not sure
you
> understand the answers to my questions.
> >   Let me know and then let's talk about it.  Maybe it will help
you
> clear up some confusion since you have similiar symptoms for both
MS 
> and ark that has been misdiagnosed in the past.
> >   Also, at this point, I would not let anyone touch your back for
> whatever reason.
> >   Have a good day,
> >   Anisa
> >
> > Lady Alexandra <txcat369@> wrote:
> >   What type of doctor should I be going to??  My MS doc, a
> neurologist,
> > has been almost unhelpful!  I have been having these problems
that
> he
> > just states "That's not MS".  Ok, your'e a neurologist, help me! 
> > After I went to that darn Chiropractor, my symptoms intensified
and
> I
> > developed new symptoms.  The pain is pretty bad too. My neuro
isn't
> > one to give ANYTHING for pain or sleep for that matter.  What is
it
> > about back massages that are bad for Arc??  I had one a few
months
> > back and had to stay in bed for 3 days??  I really need everyones
> > suggestions.  I am lost and I dont know where to start.  I did
look
> up
> > the book that Anissa suggested.  There are tons of symptoms that
I
> > have had for years that "aren't MS" but, no one will help me. 
Any
> > information on doctors would be greatly appreciated.
> > Thanks,
> > Alex
> >
> >
> >
> >
> >
> >
> >   SPONSORED LINKS
> >         Health and wellness   Health wellness product   Health
and
> wellness program     Diet fitness health nutrition wellness  
Health
> promotion and wellness   Business health wellness
> >    
> > ---------------------------------
> >   YAHOO! GROUPS LINKS
> >
> >    
> >     Visit your group "Arachnoiditis" on the web.
> >    
> >     To unsubscribe from this group, send an email to:
> >  Arachnoiditis-unsubscribe@yahoogroups.com
> >    
> >     Your use of Yahoo! Groups is subject to the Yahoo! Terms of
> Service.
> >
> >    
> > ---------------------------------
> >
>
>
>
>
>
>
>
>
>
>
> SPONSORED LINKS
> Health and wellness Health wellness product Health and wellness
program
> Diet fitness health nutrition wellness Health promotion and
wellness Womens health and wellness
>
>
>
>
>
> YAHOO! GROUPS LINKS
>
>
>  Visit your group "Arachnoiditis" on the web.
>  
>  To unsubscribe from this group, send an email to:
>  Arachnoiditis-unsubscribe@yahoogroups.com
>  
>  Your use of Yahoo! Groups is subject to the Yahoo! Terms of
Service.
>

Just another HUGE Thank You to the entire group for all of your
helpful comments and suggestions!  Now know why my neuro is treating
me like a leper... He isnt looking at me as a whole person or even my
MRIs.  He is only looking for MS, which makes sense, he is the lead
research doc on the T-cell vaccination study for MS.  He wants the
vaccine to show progress on MS symptoms. Then I come along with a
bunch of new symptoms, that "aren't MS", but he refuses to help me.
I am probably labeled as one of 'those' patients who look things up
on the internet, trying to find another disease to be stricken with.
From now on, when I go to him, nothing but MS will come out of my
mouth. Last year the dx me with Fibromyalgia only b/c they couldnt
explain this weird pains I was having.  But that label didn't take
into acct why my finger joint ached and my big toe joints were
painful to the touch. He suggested gout... I never eat ANY thing on
the gout list and I hate salt.  So, I thank all of you brave souls
out there living with this disease.  Just remember that up until the
early 1900's, MS wasn't a recognized disease.  Most patients were
sent insane assylums(?). Before that they were kicked out of there
homes and driven away from families b/c they were possessed by evil
spirits.  So there is hope that one day soon the medical community
will recogize ARC as a true disease!!  THANK YOU ALL SO MUCH!!!
Alex


--- In Arachnoiditis@yahoogroups.com, "M. Victoria Zilleruelo"
<mvzilleruelo@...> wrote:
>
> Hello Alex:  with all of your symptoms, I agree with Anisa and you
must be very brave to have the inspiration to write and describe all
of them, not to mention the agony you must suffer just to type.  I
can recommend one easy solution for your bowels and is to go to the
Fruit and Veggie Market and get some fresh dried Flaxseed, then place
about half a cup to a cup on your blender (dry) and pulverize it,
then make yourself a sandwich with smooth peanut butter (this is the
way I eat it and it tastes like nuts), (or marmalade, jelly, or
whatever you like, I even use it as salad topping) on a piece of
multigrain toast and in between place one teaspoon full of pulverized
flaxseeds for every 125 lbs of weight.  I promise you that in a week
you will see your motor running a lot better and this gives you Omega
6 fatty Acids as well as oils your joints, makes your hair, nails and
skin look really soft, smooth and shiny respectively.  Please try it,
I agonized with my bowels for a
>  long time and the Flaxseed is way better than any laxative, I am
sure you will appreciate having a painless bowel movement.
> 
> Anisa has great and REAL solutions for you to finally get
diagnosed.  Though I know for a fact that doctors KNOW what
Arachnoiditis is, but THE miserables SOB's want to keep it hush-hush
so that no legal action is taken against them.  This also will change
with time.
> 
> Your idea of Montel Williams is a great idea, perhaps we should
compose a letter and get everyone to sign it and send it with a
return receipt?
> 
> Praying for you and hoping we have been of some help to you.
> 
> Best regards,
> 
> Victoria
>
> ----- Original Message ----
> From: Anisa Benson <anisaslollys@...>
> To: Arachnoiditis@yahoogroups.com
> Sent: Wednesday, March 1, 2006 3:59:15 AM
> Subject: Re: [Arachnoiditis] Alex's Update
>
>
> Hi Alex,
> I am not a doctor, but from what you are describing, it sounds
similar to alot of my symptoms.  I would say that you have both.  If
the leisons are there to confirm that you have MS and you have some
symptoms of that, then that is one diagnosis.  If you had your L4-L5
fusion and that area also controls the bowels and bladder and with
the insects crawling feeling, prickly feet, electric shock feeling,
then those are all symptoms from your L4-L5 surgery.  You could have
the start of arachnoiditis.
> Arachnoiditis is caused by adhesions from any type of back
surgery.  when the mylen sheath is cut during surgery or if it is
affected by some type of injury, that is when more symptoms can
occur.  What happens is that adhesions  form with the healing
process. It is the adhesions that block off the nerve endings that
cause the pains and sensations.  Also, with you endometrosis
problems, that is very painful.  If they went in and did a D& C in
which the dilated and curettage your uterus to scape all that out
that will be sensitive and painful for some time also.  Remember,
tissue and nerves take a long time to heal, if they are going to
heal.  If they are being constantly disturbed by a blockage of
adhesions, than that is what the ongoing process is of the
arachnoiditis.  Your symptoms and pains are very real.  You need to
do some research on this info and print it out.
> When you or any of you out there approach a physician about your
problems, do not use the word arachnoiditis.  Explain only the
symptoms and problems that you are having.  When you take a copy of
your MRI to the doctor and even though it says arc on it, play dumb. 
Ask the doctor what this arachnoiditis is on your MRI and let him
tell you what it is.  Ask him if any of your described symptoms could
come from arc.  Let him tell you what he thinks.  That way, you will
know if you have a good physician or not.
> Another thing, the insurance companies may not recognize the arc as
a direct diagnosis, so the doctor won't get much of a re-embersment
from the insurance company.  If you explain your symptoms, that can
be billed individually with every symptom and the doctor can collect
more from the insurance company, plus he has your symptoms charted
and can follow along if you have any changes.  It is complicated out
there and they way the whole system works.  I worked with the system
for 14 + years and I understand the way it works.  I used to
challenge the insurance company for more money and to help the
patient out honesty by billing for as many symptoms as possible.  The
medical field has changed today, and the offices doing the billing
will only bill from what is put on the charts from what you tell the
doctor.  Do you understand what I am trying to say?
> Now, the part that gets more complicated and hard to believe.  Like
I said, I have almost all of your symptoms except for the abdonimal
pains and the incontenence.  My left side goes down on my once a
month.  But, I am not on any type of laxatives anymore.  I don't have
the symptoms of bugs crawling, pain, abdominal discomforts ect... as
long as I am on my magnets and wellness products.  I can function
during the day.
> All of that is another chapter of information if you are
interested, let me know and you and anyone else can email me separate
for information.
> I hope this has helped you out.  Like I said, I believe you have
diagnosis going on at the same time which makes it very complicated
and they both inter act with each other.  I also would suggest that
you get your B12 levels check to make sure you are not anemic and
instead of them suggesting diabetis, I would see if you have
hypoglycemia.  The anemia and hypoglycemia would cause you to black
out and give you some of you other feelings as well.
> Please let me know what you think.  I know this is alot to
understand, but I am here to help you if you have any questions.
> Take Care and God Bless,
> Have a nice day,
> Anisa
>
> Lady Alexandra <txcat369@...> wrote:
> Thank you to everyone for being so wonderfully supportive!! Here is
> my story. I dont know if this will answer Anisa's Qs, but maybe it
> will be a starting point. I was dx w MS 11 yrs ago & have lots of
> brain lessions. Most of the MS probs have been vision related,
> vertigo, and ataxia. (All which can be ARC symptoms from what I am
> learning) But, for the entire time that I have had MS, I have had
> these other problems that the doctors basically ignored, just
> stating, "That's not a symptom of MS."  I am not looking for pills
> either!!  In fact I just had surgery, and they gave me Vicoden 500
mg
> and Phenegrin, and I only took it the night after surgery. I hate
the
> dopey feeling.  Anyway, my other symptoms have and are: My blood
> pressure just drops so low that I am blacking out when I stand up.
> This just started 1-1/2 years ago, after the chiropractor cracked
my
> L4/L5 fusion. I have always had this electric shock sensation,
> especially when I am trying to sleep. It gets so bad that I end up
on
> the couch watching tv. I also have this constant sensation that a
bug
> is on me. Like an ant or a spider. Which totally freaks me out! I
> jump up and shake off my clothes looking for said insect, nothing.
> Then, the prickily feet thing, like when your feet go to sleep but
10
> times worse. I actually went to the hospital about this one.  The
> neurologist on call flat out told me that it wasn't related to MS
and
> I might have diabetes. Not. They ended up admitting me and giving
me
> IV steroids b/c my old neuro said it was close enough to summer
time
> and it would help my MS. There is this constant pain in my groin
> area. That is what the surgery was for. To see if they could find
any
> reason for it. They did find that I have endometriosis(?), so they
> clean it all up.  But, the pain is still there.  Then, my bowels,
> they have stopped working. My neuro tells me that if it was MS, I
> would loose control of my bowels. I used to be able to set a clock
to
> them. I went to a gastro, had an xray, called him today, he said I
> have a "total impaction".  He called in some stuff for me to try,
we
> will see.  My bladder also has issues all it's own.  But, not the
> typical MS incontinence, it is like I have to go, then I cant seem
to
> go, then when I do it burns. I go in for a UTI test, negative. 
Then,
> there is the sex thing... sometimes it works and sometimes
absolutely
> nothing. My Q is could someone who has MS who had L4/L5 back
surgery
> and tons of MRI with contrasting dye also develop Arachnoiditis??? 
> Could anyone, please ask their doctor this Q?!?  My neurologist has
> now turned on me, and is not only ignoring my pain & probs, but
also
> my attempts to help figure out what is causing all these other non-
MS
> symptoms. I do NOT know the boundaries for the neuro, or primary
when
> dealing with ARC. But, I feel like I did when I was trying to
figure
> out what was wrong with me before the MS was mentioned.  The
doctors
> just looking at me like I am some whinner, some faker, some
> hypochondriac... I am really slipping into a bad place.
> But, if anyone does find out about MS and ARC, try Montel Williams.
> Since he has MS, he might be especially receptive.  Sorry this is
so
> long... Thanks for listening to my story and for any advice.
> Alex
>
> --- In Arachnoiditis@yahoogroups.com, Anisa Benson <anisaslollys@>
> wrote:
> >
> > Dear Alex,
> >   Do you understand what arachnoiditis is?  And do you know what
> causes arachnoiditis?
> >   Also, do you understand the boundries of neurologists,
> neurosurgeons, and your primary care physician?
> >   And, have you been diagnosed or have had MRI's or x-rays or any
> kind of tests to go along with your symptoms?
> >   Do you have any MS leisons anywhere?
> >   I am just a little confused with you email and I am not sure
you
> understand the answers to my questions.
> >   Let me know and then let's talk about it.  Maybe it will help
you
> clear up some confusion since you have similiar symptoms for both
MS 
> and ark that has been misdiagnosed in the past.
> >   Also, at this point, I would not let anyone touch your back for
> whatever reason.
> >   Have a good day,
> >   Anisa
> >
> > Lady Alexandra <txcat369@> wrote:
> >   What type of doctor should I be going to??  My MS doc, a
> neurologist,
> > has been almost unhelpful!  I have been having these problems
that
> he
> > just states "That's not MS".  Ok, your'e a neurologist, help me! 
> > After I went to that darn Chiropractor, my symptoms intensified
and
> I
> > developed new symptoms.  The pain is pretty bad too. My neuro
isn't
> > one to give ANYTHING for pain or sleep for that matter.  What is
it
> > about back massages that are bad for Arc??  I had one a few
months
> > back and had to stay in bed for 3 days??  I really need everyones
> > suggestions.  I am lost and I dont know where to start.  I did
look
> up
> > the book that Anissa suggested.  There are tons of symptoms that
I
> > have had for years that "aren't MS" but, no one will help me. 
Any
> > information on doctors would be greatly appreciated.
> > Thanks,
> > Alex
> >
> >
> >
> >
> >
> >
> >   SPONSORED LINKS
> >         Health and wellness   Health wellness product   Health
and
> wellness program     Diet fitness health nutrition wellness  
Health
> promotion and wellness   Business health wellness
> >    
> > ---------------------------------
> >   YAHOO! GROUPS LINKS
> >
> >    
> >     Visit your group "Arachnoiditis" on the web.
> >    
> >     To unsubscribe from this group, send an email to:
> >  Arachnoiditis-unsubscribe@yahoogroups.com
> >    
> >     Your use of Yahoo! Groups is subject to the Yahoo! Terms of
> Service.
> >
> >    
> > ---------------------------------
> >
>
>
>
>
>
>
>
>
>
>
> SPONSORED LINKS
> Health and wellness Health wellness product Health and wellness
program
> Diet fitness health nutrition wellness Health promotion and
wellness Womens health and wellness
>
>
>
>
>
> YAHOO! GROUPS LINKS
>
>
>  Visit your group "Arachnoiditis" on the web.
>  
>  To unsubscribe from this group, send an email to:
>  Arachnoiditis-unsubscribe@yahoogroups.com
>  
>  Your use of Yahoo! Groups is subject to the Yahoo! Terms of
Service.
>

Just another HUGE Thank You to the entire group for all of your
helpful comments and suggestions!  Now know why my neuro is treating
me like a leper... He isnt looking at me as a whole person or even my
MRIs.  He is only looking for MS, which makes sense, he is the lead
research doc on the T-cell vaccination study for MS.  He wants the
vaccine to show progress on MS symptoms. Then I come along with a
bunch of new symptoms, that "aren't MS", but he refuses to help me.
I am probably labeled as one of 'those' patients who look things up
on the internet, trying to find another disease to be stricken with.
From now on, when I go to him, nothing but MS will come out of my
mouth. Last year the dx me with Fibromyalgia only b/c they couldnt
explain this weird pains I was having.  But that label didn't take
into acct why my finger joint ached and my big toe joints were
painful to the touch. He suggested gout... I never eat ANY thing on
the gout list and I hate salt.  So, I thank all of you brave souls
out there living with this disease.  Just remember that up until the
early 1900's, MS wasn't a recognized disease.  Most patients were
sent insane assylums(?). Before that they were kicked out of there
homes and driven away from families b/c they were possessed by evil
spirits.  So there is hope that one day soon the medical community
will recogize ARC as a true disease!!  THANK YOU ALL SO MUCH!!!
Alex


--- In Arachnoiditis@yahoogroups.com, "M. Victoria Zilleruelo"
<mvzilleruelo@...> wrote:
>
> Hello Alex:  with all of your symptoms, I agree with Anisa and you
must be very brave to have the inspiration to write and describe all
of them, not to mention the agony you must suffer just to type.  I
can recommend one easy solution for your bowels and is to go to the
Fruit and Veggie Market and get some fresh dried Flaxseed, then place
about half a cup to a cup on your blender (dry) and pulverize it,
then make yourself a sandwich with smooth peanut butter (this is the
way I eat it and it tastes like nuts), (or marmalade, jelly, or
whatever you like, I even use it as salad topping) on a piece of
multigrain toast and in between place one teaspoon full of pulverized
flaxseeds for every 125 lbs of weight.  I promise you that in a week
you will see your motor running a lot better and this gives you Omega
6 fatty Acids as well as oils your joints, makes your hair, nails and
skin look really soft, smooth and shiny respectively.  Please try it,
I agonized with my bowels for a
>  long time and the Flaxseed is way better than any laxative, I am
sure you will appreciate having a painless bowel movement.
>
> Anisa has great and REAL solutions for you to finally get
diagnosed.  Though I know for a fact that doctors KNOW what
Arachnoiditis is, but THE miserables SOB's want to keep it hush-hush
so that no legal action is taken against them.  This also will change
with time.
>
> Your idea of Montel Williams is a great idea, perhaps we should
compose a letter and get everyone to sign it and send it with a
return receipt?
>
> Praying for you and hoping we have been of some help to you.
>
> Best regards,
>
> Victoria
>
> ----- Original Message ----
> From: Anisa Benson <anisaslollys@...>
> To: Arachnoiditis@yahoogroups.com
> Sent: Wednesday, March 1, 2006 3:59:15 AM
> Subject: Re: [Arachnoiditis] Alex's Update
>
>
> Hi Alex,
> I am not a doctor, but from what you are describing, it sounds
similar to alot of my symptoms.  I would say that you have both.  If
the leisons are there to confirm that you have MS and you have some
symptoms of that, then that is one diagnosis.  If you had your L4-L5
fusion and that area also controls the bowels and bladder and with
the insects crawling feeling, prickly feet, electric shock feeling,
then those are all symptoms from your L4-L5 surgery.  You could have
the start of arachnoiditis.
> Arachnoiditis is caused by adhesions from any type of back
surgery.  when the mylen sheath is cut during surgery or if it is
affected by some type of injury, that is when more symptoms can
occur.  What happens is that adhesions  form with the healing
process. It is the adhesions that block off the nerve endings that
cause the pains and sensations.  Also, with you endometrosis
problems, that is very painful.  If they went in and did a D& C in
which the dilated and curettage your uterus to scape all that out
that will be sensitive and painful for some time also.  Remember,
tissue and nerves take a long time to heal, if they are going to
heal.  If they are being constantly disturbed by a blockage of
adhesions, than that is what the ongoing process is of the
arachnoiditis.  Your symptoms and pains are very real.  You need to
do some research on this info and print it out.
> When you or any of you out there approach a physician about your
problems, do not use the word arachnoiditis.  Explain only the
symptoms and problems that you are having.  When you take a copy of
your MRI to the doctor and even though it says arc on it, play dumb.
Ask the doctor what this arachnoiditis is on your MRI and let him
tell you what it is.  Ask him if any of your described symptoms could
come from arc.  Let him tell you what he thinks.  That way, you will
know if you have a good physician or not.
> Another thing, the insurance companies may not recognize the arc as
a direct diagnosis, so the doctor won't get much of a re-embersment
from the insurance company.  If you explain your symptoms, that can
be billed individually with every symptom and the doctor can collect
more from the insurance company, plus he has your symptoms charted
and can follow along if you have any changes.  It is complicated out
there and they way the whole system works.  I worked with the system
for 14 + years and I understand the way it works.  I used to
challenge the insurance company for more money and to help the
patient out honesty by billing for as many symptoms as possible.  The
medical field has changed today, and the offices doing the billing
will only bill from what is put on the charts from what you tell the
doctor.  Do you understand what I am trying to say?
> Now, the part that gets more complicated and hard to believe.  Like
I said, I have almost all of your symptoms except for the abdonimal
pains and the incontenence.  My left side goes down on my once a
month.  But, I am not on any type of laxatives anymore.  I don't have
the symptoms of bugs crawling, pain, abdominal discomforts ect... as
long as I am on my magnets and wellness products.  I can function
during the day.
> All of that is another chapter of information if you are
interested, let me know and you and anyone else can email me separate
for information.
> I hope this has helped you out.  Like I said, I believe you have
diagnosis going on at the same time which makes it very complicated
and they both inter act with each other.  I also would suggest that
you get your B12 levels check to make sure you are not anemic and
instead of them suggesting diabetis, I would see if you have
hypoglycemia.  The anemia and hypoglycemia would cause you to black
out and give you some of you other feelings as well.
> Please let me know what you think.  I know this is alot to
understand, but I am here to help you if you have any questions.
> Take Care and God Bless,
> Have a nice day,
> Anisa
>
> Lady Alexandra <txcat369@...> wrote:
> Thank you to everyone for being so wonderfully supportive!! Here is
> my story. I dont know if this will answer Anisa's Qs, but maybe it
> will be a starting point. I was dx w MS 11 yrs ago & have lots of
> brain lessions. Most of the MS probs have been vision related,
> vertigo, and ataxia. (All which can be ARC symptoms from what I am
> learning) But, for the entire time that I have had MS, I have had
> these other problems that the doctors basically ignored, just
> stating, "That's not a symptom of MS."  I am not looking for pills
> either!!  In fact I just had surgery, and they gave me Vicoden 500
mg
> and Phenegrin, and I only took it the night after surgery. I hate
the
> dopey feeling.  Anyway, my other symptoms have and are: My blood
> pressure just drops so low that I am blacking out when I stand up.
> This just started 1-1/2 years ago, after the chiropractor cracked
my
> L4/L5 fusion. I have always had this electric shock sensation,
> especially when I am trying to sleep. It gets so bad that I end up
on
> the couch watching tv. I also have this constant sensation that a
bug
> is on me. Like an ant or a spider. Which totally freaks me out! I
> jump up and shake off my clothes looking for said insect, nothing.
> Then, the prickily feet thing, like when your feet go to sleep but
10
> times worse. I actually went to the hospital about this one.  The
> neurologist on call flat out told me that it wasn't related to MS
and
> I might have diabetes. Not. They ended up admitting me and giving
me
> IV steroids b/c my old neuro said it was close enough to summer
time
> and it would help my MS. There is this constant pain in my groin
> area. That is what the surgery was for. To see if they could find
any
> reason for it. They did find that I have endometriosis(?), so they
> clean it all up.  But, the pain is still there.  Then, my bowels,
> they have stopped working. My neuro tells me that if it was MS, I
> would loose control of my bowels. I used to be able to set a clock
to
> them. I went to a gastro, had an xray, called him today, he said I
> have a "total impaction".  He called in some stuff for me to try,
we
> will see.  My bladder also has issues all it's own.  But, not the
> typical MS incontinence, it is like I have to go, then I cant seem
to
> go, then when I do it burns. I go in for a UTI test, negative.
Then,
> there is the sex thing... sometimes it works and sometimes
absolutely
> nothing. My Q is could someone who has MS who had L4/L5 back
surgery
> and tons of MRI with contrasting dye also develop Arachnoiditis???
> Could anyone, please ask their doctor this Q?!?  My neurologist has
> now turned on me, and is not only ignoring my pain & probs, but
also
> my attempts to help figure out what is causing all these other non-
MS
> symptoms. I do NOT know the boundaries for the neuro, or primary
when
> dealing with ARC. But, I feel like I did when I was trying to
figure
> out what was wrong with me before the MS was mentioned.  The
doctors
> just looking at me like I am some whinner, some faker, some
> hypochondriac... I am really slipping into a bad place.
> But, if anyone does find out about MS and ARC, try Montel Williams.
> Since he has MS, he might be especially receptive.  Sorry this is
so
> long... Thanks for listening to my story and for any advice.
> Alex
>
> --- In Arachnoiditis@yahoogroups.com, Anisa Benson <anisaslollys@>
> wrote:
> >
> > Dear Alex,
> >   Do you understand what arachnoiditis is?  And do you know what
> causes arachnoiditis?
> >   Also, do you understand the boundries of neurologists,
> neurosurgeons, and your primary care physician?
> >   And, have you been diagnosed or have had MRI's or x-rays or any
> kind of tests to go along with your symptoms?
> >   Do you have any MS leisons anywhere?
> >   I am just a little confused with you email and I am not sure
you
> understand the answers to my questions.
> >   Let me know and then let's talk about it.  Maybe it will help
you
> clear up some confusion since you have similiar symptoms for both
MS
> and ark that has been misdiagnosed in the past.
> >   Also, at this point, I would not let anyone touch your back for
> whatever reason.
> >   Have a good day,
> >   Anisa
> >
> > Lady Alexandra <txcat369@> wrote:
> >   What type of doctor should I be going to??  My MS doc, a
> neurologist,
> > has been almost unhelpful!  I have been having these problems
that
> he
> > just states "That's not MS".  Ok, your'e a neurologist, help me!
> > After I went to that darn Chiropractor, my symptoms intensified
and
> I
> > developed new symptoms.  The pain is pretty bad too. My neuro
isn't
> > one to give ANYTHING for pain or sleep for that matter.  What is
it
> > about back massages that are bad for Arc??  I had one a few
months
> > back and had to stay in bed for 3 days??  I really need everyones
> > suggestions.  I am lost and I dont know where to start.  I did
look
> up
> > the book that Anissa suggested.  There are tons of symptoms that
I
> > have had for years that "aren't MS" but, no one will help me.
Any
> > information on doctors would be greatly appreciated.
> > Thanks,
> > Alex
> >
> >
> >
> >
> >
> >
> >   SPONSORED LINKS
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> >
> >
> >     Visit your group "Arachnoiditis" on the web.
> >
> >     To unsubscribe from this group, send an email to:
> >  Arachnoiditis-unsubscribe@yahoogroups.com
> >
> >     Your use of Yahoo! Groups is subject to the Yahoo! Terms of
> Service.
> >
> >
> > ---------------------------------
> >
>
>
>
>
>
>
>
>
>
>
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>  Visit your group "Arachnoiditis" on the web.
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>

Dear wonderful group. I understand everything that everyone is
saying. I have been suffering with lies, excuse's, and even when they
have no excuse I have heard explainations, even though they were in
the complete wrong. I myself before my first back surgery for a
fusion worked in a large hospital in the Seattle area. And we had 6
O.R. rooms running at the same time when I started working there.
Then by the time I couldn't even stand up with out falling down and
could do the work I have loved all my life. I have seen so many shady
deals that went down. The deaths that were reported as natural when I
was the obvious cause of death was because of the negligence of the
nurses that despense the drugs giving patients like 10 x the dose
that was supposed to give. I saw a nurse give this little old lady a
I.V. of Morphine for 10 mg which when I read the right dose for a
I.M. injection but not for a I.V. injection which delivers a lot
larger dose  and faster to the heart then a I.M. injection The proper
dose for this lady should have been 1. mg of morphine I.V. so you can
see that this lady recieved 10 x the dose that she should have had. I
was working in a endoscopy outpatient clinic then and we would also
pick up in patients that needed scopes also. But that is only one
instance that I saw the hospital hide their mistakes. When I was
working in the O.R. of the same hospital. One year before my Steffee
plates got put in. They had 43 y/o white male that smoked which
doesn't help with the patient getting oxygen. I was only 35 then but
this guy was only 43 and married with a couple of kids. He died right
on the O.R. table and the doctor had to go down to the waiting area
and get his family to let them know that their husband and father of
her kids that he died during the spinal fusion surgery for Steffee
plates. I know that they didn't tell her every thing that they knew
and they made sure that anyone working in the Hospital O.R. to keep
quit about all of this or we would be fired. I think I very important
that we get some of these messages out. The only problem I see with
it. Is that we have to fight the medical establishment that is hiding
the poof of all the negligence that they may have. Then there is not
just people with bad backs. Except that is a very large group. But
there are people that have rashs, shortness of breath, all kinds of
different ailment and these doctors might or might not know what is
the matter with them. It's gotten to the point that you don't know
who to believe anymore. So I think we have to get just not back
patients on are side. But, people that have died of other
complications or have had things happen that they never expected and
the doctor never mentioned. We have to include all of these people
Because they have legitimate problems also. And the more we have
behind us the less they will be able to hide. I sometimes think that
I'm not writing my feeling well enough for anyone to understand what
I'm trying to say. But I hope I have done my best. I wish you all the
best. Sincerely Michael



--- In Arachnoiditis@yahoogroups.com, "M. Victoria Zilleruelo"
<mvzilleruelo@...> wrote:
>
> I think it is HIGH time we make the whole world aware of what is
happening with this disease and how much we all suffer endlessly
without relief.  Every time I have a flare up I just don't want to
wake up the next morning and it is no way to live, I am not suicidal,
but, I can understand Alex and her desperation shows right through.
I firmly believe we all should write one letter and pass it around to
sign it or endorse it or we can print the Arachnoiditis site contents
and send to anyone we all agree on.  Something has to be done to get
some relief!  I thought of Oprah since she has a good heart and seems
to get things done!
>
> ----- Original Message ----
> From: sgrabber <sgrabber@...>
> To: Arachnoiditis@yahoogroups.com
> Sent: Tuesday, February 28, 2006 7:05:56 PM
> Subject: Re: [Arachnoiditis] Doctors??
>
>
> If you think it would help, I'd be happy to write to Oprah, I'd
appreciate everone's thoughts on what to say to her etc.  Sue
> Also any ideas on the media - any ideas there? Talk shows?
> ----- Original Message -----
> From: Mvictoria zilleruelo-Martin
> To: Arachnoiditis@yahoogroups.com
> Sent: Sunday, February 26, 2006 4:24 PM
> Subject: Re: [Arachnoiditis] Doctors??
>
>
> Great idea Sue, however, we would all be filtered as SPAM.  I think
the MEDIA would be an appropriate avenue since they love
senzationalism and scandals!  Anyone thought of Oprah?
>
> ----- Original Message ----
> From: sgrabber <sgrabber@...>
> To: Arachnoiditis@yahoogroups.com
> Sent: Saturday, February 25, 2006 11:15:34 PM
> Subject: Re: [Arachnoiditis] Doctors??
>
>
> Could we write maybe 3 different e-mails and every send a different
one every third day.  We may mention that since it is caused often by
surgeons and doctors, it is not treated as it should be, etc. etc.
And, if we all keep sending them ad nauseum, with our own name signed
as well as one person in the group who could talk to them SHOULD they
contact us maybe someone will get so tired of hearing from us they'll
take action.  We all have to be of one mind to do this.  Three or
four little e-mails a week won't work.  Sue
> ----- Original Message -----
> From: TANKACY2@...
> To: Arachnoiditis@yahoogroups.com
> Sent: Saturday, February 25, 2006 10:59 PM
> Subject: Re: [Arachnoiditis] Doctors??
>
>
> Your on your own unless you can sweet talk your family doctor into
believing your in pain. When my neuro surgeon that did my 4 back
surgeries saw the arachnoiditis on the mri literally asked me to
leave his office and said theres nothing he can do for me I was in
shock. I had gone to this guy since 1986. I went to my family doctor
took all the mri and xray reports  and told her if she didn't help me
that I was going to commit suicide. Of course I'd never do that but
it got the ball rolling and now I go there every 2 months and she
refills my medications each time. Even though she didn't know
anything about arachnoiditis I printed page after page of info and
took it to her and asked if she would at least read up on it. She now
treats me  and at least asks about any new symptoms and acts like she
knows a little about it. If you do try to call for an appointment at
a new neurologist don't even mention you have arachnoiditis because
after explaining it to 8 different doctors
>  while trying to get an appointment all I heard was either they
aren't taking new patients or they don't know enough about it to
treat it. If a neurologist doesn't know about it then they have been
living under a rock and aren't keeping up with anything. Theres too
much information out there that we all know so you can't tell me they
are in the dark about it. Most of the info we read was written by a
doctor so they are well aware of what it is. They are scared to get
involved in anything that could have them involved in malpractice or
a law suit. Even though they may not have been directly responsible
for the cause they still don't want to touch anyone that has it
because somewhere down the line they could get drug into it. My new
plan is going to a doctor far away from my old doctor and im going in
there as if im just having back pain and once im there then let them
find everything out for themselves. If you've ever read the Burton
reports they have added some things. The
>  government of New Zealand is now recognizing arachnoiditis as a
very serious disease and they are helping their people. They went as
far as saying that anyone in their country in need of a myelogram,
epidural injections, etc., are being told of the high risk of
developing arach. They even mentioned how the United States and UK
are still injecting things into peoples spines as if it just routine
and not warning any patient about the risks. Even if they do warn you
its nothing more than having you sign a paper saying you read all the
big fancy words that the average patient doesn't even know or
understand. If I tell anyone I have arachnoiditis they almost laugh
and say what the heck is that? Its a funny name for a horrible
disease. If you say you have cancer everyone goes "aww im so sorry".
At least with cancer you either get better or die.  With this arah,
you get it, no one treats it, it gets worse, you don't die from it
you just have the same pain that cancer patient had
>  but you get the honors of having it the rest of your life. If the
government doesn't ease up on the restrictions they put on doctors
for prescribing pain medications then we will suffer the rest of our
lives. When a doctor is allowed to prescribe 4 pills a day for pain
because thats all they are allowed to because they will be in trouble
then we are all doomed with this stuff. If im legitimately in pain
around the clock the I should be allowed to have medicine around the
clock. So what if we get dependent or addicted. Its a life long
disease with no cure so that means we need medication every day from
now on.  So I am sitting here right now in pain because some idiot in
the government said IM only allowed a certain amount of medication.
Our government needs to wake up. I don't know how to go about getting
it started but I am going to find out. ALL of us need to swamp the
whitehouse with emails telling them we have a disease and doctors
wont treat us. Theres what..over a
>  hundred members here. Well if everyday all of us kept sending an
email eventually they would have to get doctors involved. In 10 days
we'd have over 1000 emails and just keep mulitplying eventually
someone would have to hear us. Better yet start at a lesser scale, we
can send them to the governor  but we all live in different states
and the number of emails won't add up as well as if they were sent to
the same place like the whitehouse. Short and sweet emails. Like , we
have a disease, we are in pain , no one will help us and we can't
believe you would allow this to go on in our country. Even if we all
sent the same email. It would at least get someones attention and get
them involved maybe. Then maybe doctors won't be so scared to even
say the word..ARACHNOIDITIS!!!!
>
>
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