I am so lucky to find out we live in the same area. I am a sexy single
girl and open minded. I'm very interested in you. Can we chat at the
following site?

http://www.himenow.com

Hi!

It's been a few days since I posted my request to take over this group,
and I did not receive a reply from the owner.

So, I have created a new group for people who suspect they may have MS
and are currently undiagnosed.  In addition, anyone who thinks they may
have one of the other "mimicing" syndromes such as fibromyalgia,
chronic fatigue syndrome, lupus, Lyme, etc., but who has not been
diagnosed.

Anyone who HAS gotten a diagnosis is also welcome.

The focus will be to support one another, and assist each other in
doing things the right way in order to work with the medical
establishment in determining our individual diagnoses.

The group is located at:
http://health.groups.yahoo.com/group/undiagnosed/

Hope to see you there.  I'll remain a member of this group as well.

K2


I have sent a private email suggesting that I take over
> moderating or owning this list.  >
> If I don't hear back in a few days, I'm going to start a new group
for
> those of us who are active here.

Good morning,

The owner of this list is in "bouncing" mode, and appears to be
unreachable.  I have sent a private email suggesting that I take over
moderating or owning this list.  If list owner sees this posting,
please respond to me.

If I don't hear back in a few days, I'm going to start a new group for
those of us who are active here.

Thank you,
K2

Kathleen S. Mueller

Handsome and Cool Bikers looking for fun!  Chat with them here:
http://bikerguyaaaz.googlepages.com/bikerboyz.htm

Hi Carol!!

I still have twelve more days before my first appointment with the
neurologist.  I've been keeping a diary of my symptoms every single
day.  I am so fearful she's going to say what all the rest have
said, "Peri-menopause" or "psychological".  I guess I shouldn't
anticipate that, but it has happened so many times that I've come to
expect it.  If I hadn't waited til I was 44 to try to start getting a
diagnosis, the question of peri-menopause wouldn't have come up.
It's hard convincing them that most of my symptoms have been going on
for decades, but I didn't go to doctors when I was young, and I also
didn't have insurance.  Well, I will just make the best of it and
hope she is more understanding, and actually finds something.  It is
the pain and fatigue that is the worst, but then the
weird "sensations" are definitely something in my CNS, I am
convinced.  It would be nice if they just determined it is B12
deficiency, which is likely because it mimics MS and I am a
vegetarian (not vegan, though).  So, we will see!

In the meantime, do you know what medication your doctor is giving
you?

Stay in touch!!

K2

to go a head and put me on treatment for MS.
> She's not sure which one yet.  She is so sure that it is MS that
she
> feels like this is our last option for me to get any better.  I'm a
> little bit scared to start the meds because I've heard that it can
> cause harm to you if you don't have MS.  My doctor assured me that
if
> she thought I was in any danger that she would not try it.  Wish me
> luck, I should be starting in the next couple of weeks.
>
> Write me back as soon as you can so I can catch up on you all.
>
> Friends,
>
> Carol
>

Hi lorilou and K2,

I'm finally back on line. My computer crashed and I finally got a new
one.  I had to save the money so that's why it took so long.

Feel free to let me in on what's been going on.  How have the 2 of
you been doing?  Well, I hope.  Has either of you gotten closer to a
diagnosis?

My doctor is going to go a head and put me on treatment for MS.
She's not sure which one yet.  She is so sure that it is MS that she
feels like this is our last option for me to get any better.  I'm a
little bit scared to start the meds because I've heard that it can
cause harm to you if you don't have MS.  My doctor assured me that if
she thought I was in any danger that she would not try it.  Wish me
luck, I should be starting in the next couple of weeks.

Write me back as soon as you can so I can catch up on you all.

Friends,

Carol

Hi!

Another crazy week, and I'm now on vacation!  Yay!!  So I should be
able to be online more now.  We just got high-speed satellite
installed where I live -- it took 9 hours yesterday.  We live in a
very remote area (our vacation home) and could no longer stand dial-
up.  So, this is much better.

Lori,  I have a "husband" (we're not married but have been together
almost 23 years!) and two dogs!!!!  How freaky how much we have in
common!!

K2


>
> Wow.  I thought I had posted a message a few days ago, but
something
> went wrong - probably me !!!  I, too have a full-time job.  Mine is
> not anywhere near as stressful as yours, though.  I don't want to
> quit until I absolutely have to.  I am a legal secretary with a
> husband and 2 dogs.  Most of the time it is all I can do to get
> through the workday.
>
> I too am astounded, K2, that our stories are so identical . . .
I,
> too, have been having symptoms for years.

Hi K2 and Carol.

Wow.  I thought I had posted a message a few days ago, but something
went wrong - probably me !!!  I, too have a full-time job.  Mine is
not anywhere near as stressful as yours, though.  I don't want to
quit until I absolutely have to.  I am a legal secretary with a
husband and 2 dogs.  Most of the time it is all I can do to get
through the workday.

I too am astounded, K2, that our stories are so identical . . .   I,
too, have been having symptoms for years.  Started with Migraines
when I was 25.  Diagnosed with Fibro at 33.  Have been going very
slowly downhill ever since.  My hands and feet are almost always cold
and they are always tingling to some degree or other.  They warm up a
little in the summer – the temperature will be 110 degrees today here
in the Phoenix area!!

Carol, I agree totally with K2.  You're definitely not boring anyone
here !!!  I am glad we can be supportive of each other.  I'm also
glad you are on the verge of a diagnosis.  Please let us know how
your appointment goes.

I had my very first MRI last week.  I am hoping it will show
something, although my PCP said they sometimes don't show anything.
At least he is listening and assures me that we will keep going until
we figure this out – and he is going to get me a referral to a
neurologist he knows will listen to me.  That is reassuring, but I
still feel like I'm in "Never Never Land."  I am trying desperately
to be patient !!!

We are obviously survivors – we have been fighting with
these "symptoms" for years and we have refused to give in to them.
Kudos to us !!!!

You are right, K2, no one can understand chronic pain unless they
have experienced it.

Hang in there!

Lori


--- In UNdiagnosedMS@yahoogroups.com, "K2" <hechobes@...> wrote:
>
>
> Hi!  Sorry I have been absent for a week.  Things have gotten
really
> crazy at work.  I used to work 12-hour days 7 days a week (I work
for
> my boyfriend, and I'm VP of his company).  Well, once I started
> feeling so sick in 2004, I cut my hours significantly back to a
> normal person's schedule of 8 hours, or less if I can do it, and no
> weekends.  Most days I work 6 hours at the office, and two at
home.
> On weekends I work at home for about an hour each day.
>
> So anyway, this past week we had a major problem and all of the
> executives and managers had to work practically round-the-clock.  I
> am totally exhausted and my entire body is tingling like I have
> electric current running through me and of course the pain.  Funny,
> many people say to me "Oh, you're just stressed out." when I tell
> them about my symptoms.  But you know what?  Under this kind of
> stress, I had FEWER symptoms.  It is when I'm relaxed that most of
my
> symptoms crop up -- and also after exercise.
>
> I go to the neurologist in late-July.  I'm not happy having to wait
> that long, and they put me on a list if someone cancels, but I just
> know that ain't gonna happen.  For now, I just keep a journal and I
> write down every symptom that happens each day, how long it lasts
and
> as good of a description as I can.
>
> That's the update from me... I'll try to write more later if
> possible!!
>
> HOw did it go at the doctor?!
> K2
>
>  No one understands what it is to live with chronic pain unless
they
> have done it themselves.
> >
> >   >   How have you been feeling?  What are your doctors telling
> you?  Let me know what kind of test and stuff you are going
through.
> Are you in much pain?
> >
> >   Wish me luck at the doctor tomorrow.  Also tell me more about
> yourself.
> >
>

Hi K2 and Carol.

Wow.  I thought I had posted a message a few days ago, but something
went wrong - probably me !!!  I, too have a full-time job.  Mine is
not anywhere near as stressful as yours, though.  I don't want to
quit until I absolutely have to.  I am a legal secretary with a
husband and 2 dogs.  Most of the time it is all I can do to get
through the workday.

I too am astounded, K2, that our stories are so identical . . .   I,
too, have been having symptoms for years.  Started with Migraines
when I was 25.  Diagnosed with Fibro at 33.  Have been going very
slowly downhill ever since.  My hands and feet are almost always cold
and they are always tingling to some degree or other.  They warm up a
little in the summer – the temperature will be 110 degrees today here
in the Phoenix area!!

Carol, I agree totally with K2.  You're definitely not boring anyone
here !!!  I am glad we can be supportive of each other.  I'm also
glad you are on the verge of a diagnosis.  Please let us know how
your appointment goes.

I had my very first MRI last week.  I am hoping it will show
something, although my PCP said they sometimes don't show anything.
At least he is listening and assures me that we will keep going until
we figure this out – and he is going to get me a referral to a
neurologist he knows will listen to me.  That is reassuring, but I
still feel like I'm in "Never Never Land."  I am trying desperately
to be patient !!!

We are obviously survivors – we have been fighting with
these "symptoms" for years and we have refused to give in to them.
Kudos to us !!!!

You are right, K2, no one can understand chronic pain unless they
have experienced it.

Hang in there!

Lori


--- In UNdiagnosedMS@yahoogroups.com, "K2" <hechobes@...> wrote:
>
>
> Hi!  Sorry I have been absent for a week.  Things have gotten
really
> crazy at work.  I used to work 12-hour days 7 days a week (I work
for
> my boyfriend, and I'm VP of his company).  Well, once I started
> feeling so sick in 2004, I cut my hours significantly back to a
> normal person's schedule of 8 hours, or less if I can do it, and no
> weekends.  Most days I work 6 hours at the office, and two at
home.
> On weekends I work at home for about an hour each day.
>
> So anyway, this past week we had a major problem and all of the
> executives and managers had to work practically round-the-clock.  I
> am totally exhausted and my entire body is tingling like I have
> electric current running through me and of course the pain.  Funny,
> many people say to me "Oh, you're just stressed out." when I tell
> them about my symptoms.  But you know what?  Under this kind of
> stress, I had FEWER symptoms.  It is when I'm relaxed that most of
my
> symptoms crop up -- and also after exercise.
>
> I go to the neurologist in late-July.  I'm not happy having to wait
> that long, and they put me on a list if someone cancels, but I just
> know that ain't gonna happen.  For now, I just keep a journal and I
> write down every symptom that happens each day, how long it lasts
and
> as good of a description as I can.
>
> That's the update from me... I'll try to write more later if
> possible!!
>
> HOw did it go at the doctor?!
> K2
>
>  No one understands what it is to live with chronic pain unless
they
> have done it themselves.
> >
> >   >   How have you been feeling?  What are your doctors telling
> you?  Let me know what kind of test and stuff you are going
through.
> Are you in much pain?
> >
> >   Wish me luck at the doctor tomorrow.  Also tell me more about
> yourself.
> >
>

Hi!  Sorry I have been absent for a week.  Things have gotten really
crazy at work.  I used to work 12-hour days 7 days a week (I work for
my boyfriend, and I'm VP of his company).  Well, once I started
feeling so sick in 2004, I cut my hours significantly back to a
normal person's schedule of 8 hours, or less if I can do it, and no
weekends.  Most days I work 6 hours at the office, and two at home.
On weekends I work at home for about an hour each day.

So anyway, this past week we had a major problem and all of the
executives and managers had to work practically round-the-clock.  I
am totally exhausted and my entire body is tingling like I have
electric current running through me and of course the pain.  Funny,
many people say to me "Oh, you're just stressed out." when I tell
them about my symptoms.  But you know what?  Under this kind of
stress, I had FEWER symptoms.  It is when I'm relaxed that most of my
symptoms crop up -- and also after exercise.

I go to the neurologist in late-July.  I'm not happy having to wait
that long, and they put me on a list if someone cancels, but I just
know that ain't gonna happen.  For now, I just keep a journal and I
write down every symptom that happens each day, how long it lasts and
as good of a description as I can.

That's the update from me... I'll try to write more later if
possible!!

HOw did it go at the doctor?!
K2

  No one understands what it is to live with chronic pain unless they
have done it themselves.
>
>   >   How have you been feeling?  What are your doctors telling
you?  Let me know what kind of test and stuff you are going through.
Are you in much pain?
>
>   Wish me luck at the doctor tomorrow.  Also tell me more about
yourself.
>

Karen have added you to her favorite list, check Karen's profile here
http://karenabtpassion.googlepages.com/bikerchicks.htm

Do be careful, though. You don't want to become tolerant of too high
a dosage because then it may not take the pain away anymore. I've
found that whenever I have prescription stuff, you have to wait so
long between doses that it doesn't do anything for the pain! I went
back to OTC Motrin. At least I can take it every 3 or 4 hours if I
have to. I'm lucky because the antidepressants I'm on seem to take
the pain away for long periods of time. I take it at bedtime, and
usually I am in excruciating pain by then. When I wake up in the
morning, I can take a couple Motrins and I'm "ok" -- not great, but
ok. I was poppin' Motrins like candy for a while there. Now, I
sometimes don't even have to take Motrin every day. My pain bounces
around. One minute it's in my feet, next it's my neck, etc. Is
yours like that too, or is it all in your legs and feet?

K2

>
> My doctor called me at home the other night and chewed me out for
taking to many meds. I told him that if he would give me the proper
amounts for my pain I would'nt have to. He has no clue to how much
pain I am in.

Do be careful, though.  You don't want to become tolerant of too high
a dosage because then it may not take the pain away anymore.  I've
found that whenever I have prescription stuff, you have to wait so
long between doses that it doesn't do anything for the pain!  I went
back to OTC Motrin.  At least I can take it every 3 or 4 hours if I
have to.  I'm lucky because the antidepressants I'm on seem to take
the pain away for long periods of time. I take it at bedtime, and
usually I am in excruciating pain by then.  When I wake up in the
morning, I can take a couple Motrins and I'm "ok" -- not great, but
ok.  I was poppin' Motrins like candy for a while there.  Now, I
sometimes don't even have to take Motrin every day.  My pain bounces
around.  One minute it's in my feet, next it's my neck, etc.  Is
yours like that too, or is it all in your legs and feet?

K2


>
> My doctor called me at home the other night and chewed me out for
taking to many meds.  I told him that if he would give me the proper
amounts for my pain I would'nt have to.  He has no clue to how much
pain I am in.

Bored to death? Are you kidding!? I have finally found people who
are in the exact predicament as me. I am sorry we're all going
through this, but it is wonderful to know there are others out
there. I would like to start an advocacy of some kind: "Undiagnosed
Patients Being Told They Look Fine and/or Are Crazy" lol just kidding
but something like that. If there are three of us here just talking
about this today, imagine how many thousands of people are out there
in the same situation?

K2
--- In UNdiagnosedMS@yahoogroups.com, Carol Riley
<boomersoonercriley@...> wrote:
>
> Hi, My name is Carol and I'm 42 yrs. old. I'm really glad someone
is back on this sight. I have really missed it. For along time it
was all spam and I just quit trying to get it off.
>
> I have been having symptoms for 3 yrs. now. I have been to 3
neurolagist, 2 medical doctors and the Mayo Clinic. Still no
answer. All of them except the Mayo said it is MS. Mayo said, they
would not rule out MS but would like to test further. I said to them
that I have had every test under the sun and all I want is for
someone to tell me what is wrong with me. When my symptoms first
started they thought I had carpel tunnel because it was only in my
wrist. Within a couple of weeks it was in my other arm. It slowely
spread down my body with my feet being the last to go numb. The pain
in my feet and back is so unbearable that I am now in a wheelchair.
This started in August of 2004 and by Dec. I was using a walker. I
kept getting worse and worse until now. I just had some more mri's
ran, 3 to be exact and a ct of the chest and an eeg. She said that
when she got the results back on these and compared them to my other
ones that I would get my diagnosis and we
> would start some sort of treatment for whatever I have. I go back
to her on the 14th and I can't wait. I'm finally gonna get the
answer I've been looking for. A DIAGNOSIS
>
> It is nice chatting with you all and I hope I did'nt bore you to
death. I also hope to hear from you real soon.
>
> Carol
>
> K2 <hechobes@...> wrote:
>
> Hello Lori and welcome here. I am floored by your story, with the
> exception of your having been diagnosed with FM (I have not been
> diagnosed with anything, and think I also have FM), and I haven't
> been to a neuro yet (but have had migraines since I was 10 years
old)
> our stories are exactly the same, word-for-word. I am so
> discouraged. But the good news is I have my first appt with a
> neurologist, and she sounds really good so hopefully she will
listen
> to my symptoms. Because I waited til my 40s to begin trying to find
> out what is wrong (I've had symptoms since my teens and 20s) all
> doctors keep saying peri-menopause or depression. I am so
> frustrated. Like you, I know that the heat intolerance is not hot
> flashes. I don't have hot flashes. I just get sick when I get too
> warm. But the catch is that my feet and hands are always cold, so I
> bundle up. Very weird. I know when I'm depressed and when I'm not,
> and this is definitely something physical. I was tested for Lupus,
> and have no inflammatory markers or other signs that diagnose me
for
> lupus or RA. The rheumatologist and all 7 of the different PCPs
I've
> gone to keep treating me for sleep disorder. That's fine, but it's
> only ONE SYMPTOM of dozens. I maintain that the disordered sleep is
> a SYMPTOM of both FM and MS. Every web site you look at on both
> subjects says so, yet these doctors keep saying "If you'd just get
> your sleep in order, you'd be all better." I am now up to 6 1/2
> hours sleep, straight through with no interruptions (used to wake
up
> 17 - 20 times a night). And my cognitive and neurological symptoms
> are worse than ever. My thyroid is always normal. I have it checked
> all the time bec my mother has really bad endocrine problems
> (Addison's disease and hypothyrodism and no pituitary gland). I do
> have a hereditary spherocytosis (blood cells are odd-shaped and
kill
> themselves off), and this can cause anemia, but all doctors have
said
> the anemia doesn't cause my symptoms. I read everywhere online that
> anemia symptoms are exactly what I've been experiencing, but they
> keep saying no. I mean, if they had just said "yes, you have anemia
> and that's causing the tingling, pain, cognitive symptoms bla bla
> bla" I would've gone away a long time ago and stopped pushing them
> for answers. I honestly think none of them knows anything. I mean,
> they're not living in my body that I know so well, ya know what I
> mean?
>
> Anyway, I would love to continue communicating with you, either
here
> or private email. We sure have a lot in common!
>
> If you'd like to visit my blog and know more of my story it's
> www.k2walkingwounded.blogspot.com
>
> Best wishes,
>
> K2
>
> --- In UNdiagnosedMS@yahoogroups.com, "lorilu4453" <lorilu4453@>
> wrote:
> >
> > Here's my story so far: I was diagnosed with Fibromyalgia in
1990.
> > Along with that I have developed extreme heat-sensitivity the
last
> > couple of years. I knew that wasn't Fibro-related, but but didn't
> > know it could be MS-related until my sister was diagnosed with MS
2
> > years ago. I also have increasing cognitive issues and fatigue
> which
> > are making it hard to do my job. And I have pretty much all the
> > other symptoms of Fibro.
> >
> > Since I started feeling a lot worse in the last couple of months,
I
> > went back to my neurologist. It was like pulling teeth to get him
> to
> > listen to my symptoms :o) He has been treating me for years for
> > migraine headaches, and I guess he wasn't inclined to listen to
any
> > new symptoms. He tried to say it was hormonal (I have been having
> hot
> > flashes for 15 years - my "heat intolerance" IS NOT hormonal!!!)
> Then
> > he tried to put it off to Thyroid - I handed him a copy of a
blood
> > test my primary care physician requested the end of May -- my
> thyroid
> > is normal. All the other blood results were all normal or
> negative -
> > no hepatitis nor HIV. My sed rate is 1, so no lupus, rheumatoid
> > arthritis, etc. He then tried to put it off to the Fibromyalgia -
> > the newest theory about Fibro is that it is caused by sleep
> > problems. I told him I was sleeping better than I had in years.
> He
> > took me off of 2 of the preventative medications for migraines
that
> > could possibly be causing fatigue and cognitive issues. So far I
> am
> > not feeling any better . . . I told him that my Primary Care
> > Physician (PCP) tried to order an MRI, but the insurance company
> > wanted more back-up notes, so my PCP referred me back to my
> > neurologist.
> >
> > Finally, after I cried and probably sounded quite impatient and
> > irritable, my neuro calmly conceded that I should have an MRI.
> (Gee,
> > isn't that what I said?) The order he wrote for the MRI was for a
> > REPEAT MRI (I have never had one before . . .) because of chronic
> > migraines and because heat intolerance indicates demyelination. I
> am
> > pretty sure, from the way he acted, that he thought I was over-
> > reacting. The MRI is scheduled for next week. At least I am
> getting
> > started . . . I am hoping it shows SOMETHING.
> >
> > My older sister has MS and it took her 4 months to get diagnosed
> for
> > sure. She had symptoms for years (since her 30s) and she figured
it
> > was Chronic Fatigue Syndrome & Fibro. Her symptoms got worse 3
> years
> > ago and they started testing her. She had an inconclusive MRI, so
> the
> > doctor did a lumbar puncture, and an evoked potentials test. This
> > finally resulted in her diagnosis. I have read numerous articles
on
> > the internet and there are MANY stories about how it is very
> > difficult sometimes to get diagnosed. I am trying to be patient!
> >
> > I am both hopeful that it is MS (to finally explain why I feel so
> > bad) and scared that it is MS. My sister said this was normal -
> that
> > she felt the same way.
> >
> > I am very glad that I found this group. Thanks for being here!!
> >
> > Lori
> > Mesa AZ
> >
>
>
>
>
>
>
>
>
> ---------------------------------
> Luggage? GPS? Comic books?
> Check out fitting gifts for grads at Yahoo! Search.
>

Bored to death?  Are you kidding!?  I have finally found people who
are in the exact predicament as me.  I am sorry we're all going
through this, but it is wonderful to know there are others out
there.  I would like to start an advocacy of some kind:  "Undiagnosed
Patients Being Told They Look Fine and/or Are Crazy" lol just kidding
but something like that.  If there are three of us here just talking
about this today, imagine how many thousands of people are out there
in the same situation?

K2
--- In UNdiagnosedMS@yahoogroups.com, Carol Riley
<boomersoonercriley@...> wrote:
>
> Hi,  My name is Carol and I'm 42 yrs. old.  I'm really glad someone
is back on this sight.  I have really missed it.  For along time it
was all spam and I just quit trying to get it off.
>
>   I have  been having symptoms for 3 yrs. now.  I have been to 3
neurolagist, 2 medical doctors and the Mayo Clinic.  Still no
answer.  All of them except the Mayo said it is MS.  Mayo said,  they
would not rule out MS but would like to test further.  I said to them
that I have had every test under the sun and all I want is for
someone to tell me what is wrong with me.  When my symptoms first
started they thought I had carpel tunnel because it was only in my
wrist.  Within a couple of weeks it was in my other arm.  It slowely
spread down my body with my feet being the last to go numb.  The pain
in my feet and  back is so unbearable that I am now in a wheelchair.
This started in August of 2004 and by Dec. I was using a walker.  I
kept getting worse and worse until now.  I just had some more mri's
ran, 3 to be exact and a ct of the chest and an eeg.  She said that
when she got the results back on these and compared them to my other
ones that I would get my diagnosis and we
>  would start some sort of treatment for whatever I have.  I go back
to her on the 14th and I can't wait.  I'm finally gonna get the
answer I've been looking for.  A DIAGNOSIS
>
>   It is nice chatting with you all and I hope I did'nt bore you to
death.  I also hope to hear from you real soon.
>
>   Carol
>
> K2 <hechobes@...> wrote:
>
> Hello Lori and welcome here. I am floored by your story, with the
> exception of your having been diagnosed with FM (I have not been
> diagnosed with anything, and think I also have FM), and I haven't
> been to a neuro yet (but have had migraines since I was 10 years
old)
> our stories are exactly the same, word-for-word. I am so
> discouraged. But the good news is I have my first appt with a
> neurologist, and she sounds really good so hopefully she will
listen
> to my symptoms. Because I waited til my 40s to begin trying to find
> out what is wrong (I've had symptoms since my teens and 20s) all
> doctors keep saying peri-menopause or depression. I am so
> frustrated. Like you, I know that the heat intolerance is not hot
> flashes. I don't have hot flashes. I just get sick when I get too
> warm. But the catch is that my feet and hands are always cold, so I
> bundle up. Very weird. I know when I'm depressed and when I'm not,
> and this is definitely something physical. I was tested for Lupus,
> and have no inflammatory markers or other signs that diagnose me
for
> lupus or RA. The rheumatologist and all 7 of the different PCPs
I've
> gone to keep treating me for sleep disorder. That's fine, but it's
> only ONE SYMPTOM of dozens. I maintain that the disordered sleep is
> a SYMPTOM of both FM and MS. Every web site you look at on both
> subjects says so, yet these doctors keep saying "If you'd just get
> your sleep in order, you'd be all better." I am now up to 6 1/2
> hours sleep, straight through with no interruptions (used to wake
up
> 17 - 20 times a night). And my cognitive and neurological symptoms
> are worse than ever. My thyroid is always normal. I have it checked
> all the time bec my mother has really bad endocrine problems
> (Addison's disease and hypothyrodism and no pituitary gland). I do
> have a hereditary spherocytosis (blood cells are odd-shaped and
kill
> themselves off), and this can cause anemia, but all doctors have
said
> the anemia doesn't cause my symptoms. I read everywhere online that
> anemia symptoms are exactly what I've been experiencing, but they
> keep saying no. I mean, if they had just said "yes, you have anemia
> and that's causing the tingling, pain, cognitive symptoms bla bla
> bla" I would've gone away a long time ago and stopped pushing them
> for answers. I honestly think none of them knows anything. I mean,
> they're not living in my body that I know so well, ya know what I
> mean?
>
> Anyway, I would love to continue communicating with you, either
here
> or private email. We sure have a lot in common!
>
> If you'd like to visit my blog and know more of my story it's
> www.k2walkingwounded.blogspot.com
>
> Best wishes,
>
> K2
>
> --- In UNdiagnosedMS@yahoogroups.com, "lorilu4453" <lorilu4453@>
> wrote:
> >
> > Here's my story so far: I was diagnosed with Fibromyalgia in
1990.
> > Along with that I have developed extreme heat-sensitivity the
last
> > couple of years. I knew that wasn't Fibro-related, but but didn't
> > know it could be MS-related until my sister was diagnosed with MS
2
> > years ago. I also have increasing cognitive issues and fatigue
> which
> > are making it hard to do my job. And I have pretty much all the
> > other symptoms of Fibro.
> >
> > Since I started feeling a lot worse in the last couple of months,
I
> > went back to my neurologist. It was like pulling teeth to get him
> to
> > listen to my symptoms :o) He has been treating me for years for
> > migraine headaches, and I guess he wasn't inclined to listen to
any
> > new symptoms. He tried to say it was hormonal (I have been having
> hot
> > flashes for 15 years - my "heat intolerance" IS NOT hormonal!!!)
> Then
> > he tried to put it off to Thyroid - I handed him a copy of a
blood
> > test my primary care physician requested the end of May -- my
> thyroid
> > is normal. All the other blood results were all normal or
> negative -
> > no hepatitis nor HIV. My sed rate is 1, so no lupus, rheumatoid
> > arthritis, etc. He then tried to put it off to the Fibromyalgia -
> > the newest theory about Fibro is that it is caused by sleep
> > problems. I told him I was sleeping better than I had in years.
> He
> > took me off of 2 of the preventative medications for migraines
that
> > could possibly be causing fatigue and cognitive issues. So far I
> am
> > not feeling any better . . . I told him that my Primary Care
> > Physician (PCP) tried to order an MRI, but the insurance company
> > wanted more back-up notes, so my PCP referred me back to my
> > neurologist.
> >
> > Finally, after I cried and probably sounded quite impatient and
> > irritable, my neuro calmly conceded that I should have an MRI.
> (Gee,
> > isn't that what I said?) The order he wrote for the MRI was for a
> > REPEAT MRI (I have never had one before . . .) because of chronic
> > migraines and because heat intolerance indicates demyelination. I
> am
> > pretty sure, from the way he acted, that he thought I was over-
> > reacting. The MRI is scheduled for next week. At least I am
> getting
> > started . . . I am hoping it shows SOMETHING.
> >
> > My older sister has MS and it took her 4 months to get diagnosed
> for
> > sure. She had symptoms for years (since her 30s) and she figured
it
> > was Chronic Fatigue Syndrome & Fibro. Her symptoms got worse 3
> years
> > ago and they started testing her. She had an inconclusive MRI, so
> the
> > doctor did a lumbar puncture, and an evoked potentials test. This
> > finally resulted in her diagnosis. I have read numerous articles
on
> > the internet and there are MANY stories about how it is very
> > difficult sometimes to get diagnosed. I am trying to be patient!
> >
> > I am both hopeful that it is MS (to finally explain why I feel so
> > bad) and scared that it is MS. My sister said this was normal -
> that
> > she felt the same way.
> >
> > I am very glad that I found this group. Thanks for being here!!
> >
> > Lori
> > Mesa AZ
> >
>
>
>
>
>
>
>
>
> ---------------------------------
> Luggage? GPS? Comic books?
> Check out fitting  gifts for grads at Yahoo! Search.
>

Hello Lori and welcome here. I am floored by your story, with the
exception of your having been diagnosed with FM (I have not been
diagnosed with anything, and think I also have FM), and I haven't
been to a neuro yet (but have had migraines since I was 10 years old)
our stories are exactly the same, word-for-word. I am so
discouraged. But the good news is I have my first appt with a
neurologist, and she sounds really good so hopefully she will listen
to my symptoms. Because I waited til my 40s to begin trying to find
out what is wrong (I've had symptoms since my teens and 20s) all
doctors keep saying peri-menopause or depression. I am so
frustrated. Like you, I know that the heat intolerance is not hot
flashes. I don't have hot flashes. I just get sick when I get too
warm. But the catch is that my feet and hands are always cold, so I
bundle up. Very weird. I know when I'm depressed and when I'm not,
and this is definitely something physical. I was tested for Lupus,
and have no inflammatory markers or other signs that diagnose me for
lupus or RA. The rheumatologist and all 7 of the different PCPs I've
gone to keep treating me for sleep disorder. That's fine, but it's
only ONE SYMPTOM of dozens. I maintain that the disordered sleep is
a SYMPTOM of both FM and MS. Every web site you look at on both
subjects says so, yet these doctors keep saying "If you'd just get
your sleep in order, you'd be all better." I am now up to 6 1/2
hours sleep, straight through with no interruptions (used to wake up
17 - 20 times a night). And my cognitive and neurological symptoms
are worse than ever. My thyroid is always normal. I have it checked
all the time bec my mother has really bad endocrine problems
(Addison's disease and hypothyrodism and no pituitary gland). I do
have a hereditary spherocytosis (blood cells are odd-shaped and kill
themselves off), and this can cause anemia, but all doctors have said
the anemia doesn't cause my symptoms. I read everywhere online that
anemia symptoms are exactly what I've been experiencing, but they
keep saying no. I mean, if they had just said "yes, you have anemia
and that's causing the tingling, pain, cognitive symptoms bla bla
bla" I would've gone away a long time ago and stopped pushing them
for answers. I honestly think none of them knows anything. I mean,
they're not living in my body that I know so well, ya know what I
mean?

Anyway, I would love to continue communicating with you, either here
or private email. We sure have a lot in common!

If you'd like to visit my blog and know more of my story it's
www.k2walkingwounded.blogspot.com

Best wishes,

K2

--- In UNdiagnosedMS@yahoogroups.com, "lorilu4453" <lorilu4453@...>
wrote:
>
> Here's my story so far: I was diagnosed with Fibromyalgia in 1990.
> Along with that I have developed extreme heat-sensitivity the last
> couple of years. I knew that wasn't Fibro-related, but but didn't
> know it could be MS-related until my sister was diagnosed with MS 2
> years ago. I also have increasing cognitive issues and fatigue
which
> are making it hard to do my job. And I have pretty much all the
> other symptoms of Fibro.
>
> Since I started feeling a lot worse in the last couple of months, I
> went back to my neurologist. It was like pulling teeth to get him
to
> listen to my symptoms :o) He has been treating me for years for
> migraine headaches, and I guess he wasn't inclined to listen to any
> new symptoms. He tried to say it was hormonal (I have been having
hot
> flashes for 15 years - my "heat intolerance" IS NOT hormonal!!!)
Then
> he tried to put it off to Thyroid - I handed him a copy of a blood
> test my primary care physician requested the end of May -- my
thyroid
> is normal. All the other blood results were all normal or
negative -
> no hepatitis nor HIV. My sed rate is 1, so no lupus, rheumatoid
> arthritis, etc. He then tried to put it off to the Fibromyalgia -
> the newest theory about Fibro is that it is caused by sleep
> problems. I told him I was sleeping better than I had in years.
He
> took me off of 2 of the preventative medications for migraines that
> could possibly be causing fatigue and cognitive issues. So far I
am
> not feeling any better . . . I told him that my Primary Care
> Physician (PCP) tried to order an MRI, but the insurance company
> wanted more back-up notes, so my PCP referred me back to my
> neurologist.
>
> Finally, after I cried and probably sounded quite impatient and
> irritable, my neuro calmly conceded that I should have an MRI.
(Gee,
> isn't that what I said?) The order he wrote for the MRI was for a
> REPEAT MRI (I have never had one before . . .) because of chronic
> migraines and because heat intolerance indicates demyelination. I
am
> pretty sure, from the way he acted, that he thought I was over-
> reacting. The MRI is scheduled for next week. At least I am
getting
> started . . . I am hoping it shows SOMETHING.
>
> My older sister has MS and it took her 4 months to get diagnosed
for
> sure. She had symptoms for years (since her 30s) and she figured it
> was Chronic Fatigue Syndrome & Fibro. Her symptoms got worse 3
years
> ago and they started testing her. She had an inconclusive MRI, so
the
> doctor did a lumbar puncture, and an evoked potentials test. This
> finally resulted in her diagnosis. I have read numerous articles on
> the internet and there are MANY stories about how it is very
> difficult sometimes to get diagnosed. I am trying to be patient!
>
> I am both hopeful that it is MS (to finally explain why I feel so
> bad) and scared that it is MS. My sister said this was normal -
that
> she felt the same way.
>
> I am very glad that I found this group. Thanks for being here!!
>
> Lori
> Mesa AZ
>

Hello Lori and welcome here.  I am floored by your story, with the
exception of your having been diagnosed with FM (I have not been
diagnosed with anything, and think I also have FM), and I haven't
been to a neuro yet (but have had migraines since I was 10 years old)
our stories are exactly the same, word-for-word.   I am so
discouraged.  But the good news is I have my first appt with a
neurologist, and she sounds really good so hopefully she will listen
to my symptoms.  Because I waited til my 40s to begin trying to find
out what is wrong (I've had symptoms since my teens and 20s) all
doctors keep saying peri-menopause or depression.  I am so
frustrated.  Like you, I know that the heat intolerance is not hot
flashes.  I don't have hot flashes.  I just get sick when I get too
warm.  But the catch is that my feet and hands are always cold, so I
bundle up.  Very weird. I know when I'm depressed and when I'm not,
and this is definitely something physical.  I was tested for Lupus,
and have no inflammatory markers or other signs that diagnose me for
lupus or RA.  The rheumatologist and all 7 of the different PCPs I've
gone to keep treating me for sleep disorder.  That's fine, but it's
only ONE SYMPTOM of dozens.  I maintain that the disordered sleep is
a SYMPTOM of both FM and MS.  Every web site you look at on both
subjects says so, yet these doctors keep saying "If you'd just get
your sleep in order, you'd be all better."  I am now up to 6 1/2
hours sleep, straight through with no interruptions (used to wake up
17 - 20 times a night).  And my cognitive and neurological symptoms
are worse than ever.  My thyroid is always normal.  I have it checked
all the time bec my mother has really bad endocrine problems
(Addison's disease and hypothyrodism and no pituitary gland). I do
have a hereditary spherocytosis (blood cells are odd-shaped and kill
themselves off), and this can cause anemia, but all doctors have said
the anemia doesn't cause my symptoms.  I read everywhere online that
anemia symptoms are exactly what I've been experiencing, but they
keep saying no.  I mean, if they had just said "yes, you have anemia
and that's causing the tingling, pain, cognitive symptoms bla bla
bla" I would've gone away a long time ago and stopped pushing them
for answers.  I honestly think none of them knows anything.  I mean,
they're not living in my body that I know so well, ya know what I
mean?

Anyway, I would love to continue communicating with you, either here
or private email.  We sure have a lot in common!

If you'd like to visit my blog and know more of my story it's
www.k2walkingwounded.blogspot.com

Best wishes,

K2



--- In UNdiagnosedMS@yahoogroups.com, "lorilu4453" <lorilu4453@...>
wrote:
>
> Here's my story so far:  I was diagnosed with Fibromyalgia in 1990.
> Along with that I have developed extreme heat-sensitivity the last
> couple of years.  I knew that wasn't Fibro-related, but but didn't
> know it could be MS-related until my sister was diagnosed with MS 2
> years ago.  I also have increasing cognitive issues and fatigue
which
> are making it hard to do my job.  And I have pretty much all the
> other symptoms of Fibro.
>
> Since I started feeling a lot worse in the last couple of months, I
> went back to my neurologist. It was like pulling teeth to get him
to
> listen to my symptoms :o) He has been treating me for years for
> migraine headaches, and I guess he wasn't inclined to listen to any
> new symptoms. He tried to say it was hormonal (I have been having
hot
> flashes for 15 years - my "heat intolerance" IS NOT hormonal!!!)
Then
> he tried to put it off to Thyroid - I handed him a copy of a blood
> test my primary care physician requested the end of May -- my
thyroid
> is normal.  All the other blood results were all normal or
negative -
> no hepatitis nor HIV.  My sed rate is 1, so no lupus, rheumatoid
> arthritis, etc.  He then tried to put it off to the Fibromyalgia -
> the newest theory about Fibro is that it is caused by sleep
> problems.  I told him I was sleeping better than I had in years.
He
> took me off of 2 of the preventative medications for migraines that
> could possibly be causing fatigue and cognitive issues.  So far I
am
> not feeling any better . . .  I told him that my Primary Care
> Physician (PCP) tried to order an MRI, but the insurance company
> wanted more back-up notes, so my PCP referred me back to my
> neurologist.
>
> Finally, after I cried and probably sounded quite impatient and
> irritable, my neuro calmly conceded that I should have an MRI.
(Gee,
> isn't that what I said?) The order he wrote for the MRI was for a
> REPEAT MRI (I have never had one before . . .) because of chronic
> migraines and because heat intolerance indicates demyelination.  I
am
> pretty sure, from the way he acted, that he thought I was over-
> reacting.  The MRI is scheduled for next week. At least I am
getting
> started . . . I am hoping it shows SOMETHING.
>
> My older sister has MS and it took her 4 months to get diagnosed
for
> sure. She had symptoms for years (since her 30s) and she figured it
> was Chronic Fatigue Syndrome & Fibro. Her symptoms got worse 3
years
> ago and they started testing her. She had an inconclusive MRI, so
the
> doctor did a lumbar puncture, and an evoked potentials test. This
> finally resulted in her diagnosis. I have read numerous articles on
> the internet and there are MANY stories about how it is very
> difficult sometimes to get diagnosed.  I am trying to be patient!
>
> I am both hopeful that it is MS (to finally explain why I feel so
> bad) and scared that it is MS.  My sister said this was normal -
that
> she felt the same way.
>
> I am very glad that I found this group.  Thanks for being here!!
>
> Lori
> Mesa AZ
>

Here's my story so far:  I was diagnosed with Fibromyalgia in 1990.
Along with that I have developed extreme heat-sensitivity the last
couple of years.  I knew that wasn't Fibro-related, but but didn't
know it could be MS-related until my sister was diagnosed with MS 2
years ago.  I also have increasing cognitive issues and fatigue which
are making it hard to do my job.  And I have pretty much all the
other symptoms of Fibro.

Since I started feeling a lot worse in the last couple of months, I
went back to my neurologist. It was like pulling teeth to get him to
listen to my symptoms :o) He has been treating me for years for
migraine headaches, and I guess he wasn't inclined to listen to any
new symptoms. He tried to say it was hormonal (I have been having hot
flashes for 15 years - my "heat intolerance" IS NOT hormonal!!!) Then
he tried to put it off to Thyroid - I handed him a copy of a blood
test my primary care physician requested the end of May -- my thyroid
is normal.  All the other blood results were all normal or negative -
no hepatitis nor HIV.  My sed rate is 1, so no lupus, rheumatoid
arthritis, etc.  He then tried to put it off to the Fibromyalgia -
the newest theory about Fibro is that it is caused by sleep
problems.  I told him I was sleeping better than I had in years.  He
took me off of 2 of the preventative medications for migraines that
could possibly be causing fatigue and cognitive issues.  So far I am
not feeling any better . . .  I told him that my Primary Care
Physician (PCP) tried to order an MRI, but the insurance company
wanted more back-up notes, so my PCP referred me back to my
neurologist.

Finally, after I cried and probably sounded quite impatient and
irritable, my neuro calmly conceded that I should have an MRI.  (Gee,
isn't that what I said?) The order he wrote for the MRI was for a
REPEAT MRI (I have never had one before . . .) because of chronic
migraines and because heat intolerance indicates demyelination.  I am
pretty sure, from the way he acted, that he thought I was over-
reacting.  The MRI is scheduled for next week. At least I am getting
started . . . I am hoping it shows SOMETHING.

My older sister has MS and it took her 4 months to get diagnosed for
sure. She had symptoms for years (since her 30s) and she figured it
was Chronic Fatigue Syndrome & Fibro. Her symptoms got worse 3 years
ago and they started testing her. She had an inconclusive MRI, so the
doctor did a lumbar puncture, and an evoked potentials test. This
finally resulted in her diagnosis. I have read numerous articles on
the internet and there are MANY stories about how it is very
difficult sometimes to get diagnosed.  I am trying to be patient!

I am both hopeful that it is MS (to finally explain why I feel so
bad) and scared that it is MS.  My sister said this was normal - that
she felt the same way.

I am very glad that I found this group.  Thanks for being here!!

Lori
Mesa AZ

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Hi Teresa,

I'm gonna take a wild guess and say it's an insurance issue.  For instance,
maybe only one
spinal tap per year is covered.  In my experience, I've found out that a lot of
the decisions
these doctors make are based on what is and isn't covered by insurance -- only
they don't
tell the patient!!!!  I found out a lot of stuff about my own situation from
somebody I "met"
in one of these Yahoo groups who was a nurse.  In my case, some tests were run
to see if I
have fibromyalgia, but apparently the HMO I'm on doesn't recognize that as a
covered
reason, so my doctor checked off "insomnia" on the form.  I somehow got a copy
of the
form, I forget how, and I was OUTRAGED that they made it appear as though I was
being
treated for insomnia (which is only one symptom of hundreds).  This nurse
explained to
me that it was probably the doctor's way of getting around the system so the
tests would
be paid for by my HMO.  In another instance, I went to an osteopath which is
almost just
like a chiropractor.  My HMO said 6 visits would be covered under their
chiropractic policy.
When they looked more closely and saw that the doctor was an osteopath, they
promptly
denied coverage and I had to beg and plead and write letters and stuff.  They
relented and
covered the six visits, but refused to cover any more, even in the following
year.  I had to
pay $150 a whack after that.  Needless to say, I had to stop going to the
wonderful
osteopath because of it.  So, I would wager a guess that your friend's situation
is
something similar.  But, that is just a guess.

By the way, I have similar pain to what your friend has, and my hands and feet
don't work
properly anymore, and my doctor refuses to send me to a neurologist.  "There's
nothing
wrong with you" is a phrase I've heard too many times.  Or, the ever-popular
"Peri-
menopause".  Makes me want to scream.

Good luck to your friend, please keep us posted!

K2

--- In UNdiagnosedMS@yahoogroups.com, "Teresa" <stopdat2005@...> wrote:
>
> Hi everyone, my name is Teresa and I just joined your group..I don't
> have MS that I'm aware of but my brother did and he died rather
> suddenly within only a few months of being diagnosied.. Now I have a
> very close friend that they are telling her she is showing signs of MS,
> she had a MRI, that was negative of lesions, she's having lots of pain
> in her face, neck, fingers and hands don't work right at times... They
> are just shuffling her around and won't do a spinal tap, why? I don't
> know.. They (meaning her doctors) won't repeat her MRI till August a
> full year after the first one.. Can anyone tell me.. what is the proper
> way to get a diagnosises? I have Neurosarcoidosis which is similar to
> MS in its symptoms.. and is a autoimmune disease as well, and I know
> that the quicker you are diagnosised and the quicker you start
> treatment the better the outcome.. anyone have any suggestions or ideas?
>

WOW!  I do wish you luck!  I wish they had a doctor like that around here.  I
live in
Massachusetts.  You'd think that Boston would be up on all the latest stuff. 
But not in my
case, it has just been one hassle after another.

I thought I was having seizures... when I start my period I get these weird
things that
happen like a buzzing in my ears and the room goes black and I pass out on the
floor and
vomit and stuff.  My doctor said it wasn't a seizure.  My Mom had seizures for
many years,
but hers were different.

I was thinking of contacting the list owner and seeing if I could moderate. 
Hmmmm....

K2


> >
> Hi K2,  I just wanted you to wish me luck.  I finally got an
> appointment with a neurologist that specializes in hard to diagnose
> diseases.  Your doctor has to refer you and then she has to accept
> you.  So it's very hard to get in to see her.  I feel very lucky.
>
> I have had a couple of seizures in the last few days and my doctor
> put me on more anti-seizure medication and so far it has worked.  I
> guess this is just another symptom.  He did'nt seem to think it was
> my meds. causing it, and he really could'nt see anything else
> either.  Just one more thing added to my list.
>
> How do we get all of this spam off of here?  How do you become a
> moderator so you can scan this junk?  I don't know anything about it
> and I thought maybe you would.
>
> I had better go but thanks for the nice response.  Your friend.
>
> Carol
>
>
>
>

Hi everyone, my name is Teresa and I just joined your group..I don't
have MS that I'm aware of but my brother did and he died rather
suddenly within only a few months of being diagnosied.. Now I have a
very close friend that they are telling her she is showing signs of MS,
she had a MRI, that was negative of lesions, she's having lots of pain
in her face, neck, fingers and hands don't work right at times... They
are just shuffling her around and won't do a spinal tap, why? I don't
know.. They (meaning her doctors) won't repeat her MRI till August a
full year after the first one.. Can anyone tell me.. what is the proper
way to get a diagnosises? I have Neurosarcoidosis which is similar to
MS in its symptoms.. and is a autoimmune disease as well, and I know
that the quicker you are diagnosised and the quicker you start
treatment the better the outcome.. anyone have any suggestions or ideas?

--- In UNdiagnosedMS@yahoogroups.com, "K2" <hechobes@...> wrote:
>
>
> Hi Carol,
>
> I just want to be supportive, and really don't have much
suggestions.  I am so astonished that
> they actually found lesions and STILL won't diagnose or treat.
What is wrong with the
> medical establishment?  It is ridiculous.  I'm sorry you are going
through this.  It is just
> horrible.
>
> K2
>
Hi K2,  I just wanted you to wish me luck.  I finally got an
appointment with a neurologist that specializes in hard to diagnose
diseases.  Your doctor has to refer you and then she has to accept
you.  So it's very hard to get in to see her.  I feel very lucky.

I have had a couple of seizures in the last few days and my doctor
put me on more anti-seizure medication and so far it has worked.  I
guess this is just another symptom.  He did'nt seem to think it was
my meds. causing it, and he really could'nt see anything else
either.  Just one more thing added to my list.

How do we get all of this spam off of here?  How do you become a
moderator so you can scan this junk?  I don't know anything about it
and I thought maybe you would.

I had better go but thanks for the nice response.  Your friend.

Carol




> > I have been tested for MS and they found 1 lesion in the brain
and 1
> > in the spinal cord.  The one in the spinal cord measures from the
2nd
> > to the 6th vertebre with complete demeyelination.  I was told
with
> > that great of length of open nerves is the cause of my mobility
loss
> > and severe chronic pain.  The neurologist I was going to at the
time
> > felt like I might have MS but not enough evidence to start me on
> > treatment.  So here I am with no answers.
> >
> > Does anyone have any suggestions for me.  I am totally at my
witts
> > end.
>

Hi Carol,

I just want to be supportive, and really don't have much suggestions.  I am so
astonished that
they actually found lesions and STILL won't diagnose or treat.  What is wrong
with the
medical establishment?  It is ridiculous.  I'm sorry you are going through this.
It is just
horrible.

K2

> I have been tested for MS and they found 1 lesion in the brain and 1
> in the spinal cord.  The one in the spinal cord measures from the 2nd
> to the 6th vertebre with complete demeyelination.  I was told with
> that great of length of open nerves is the cause of my mobility loss
> and severe chronic pain.  The neurologist I was going to at the time
> felt like I might have MS but not enough evidence to start me on
> treatment.  So here I am with no answers.
>
> Does anyone have any suggestions for me.  I am totally at my witts
> end.

Hi!!  I'm glad two of us are new!!  How strange, we joined on the same day! 
Isn't that
weird?!

Anyway, my B12 was tested at the very beginning and found normal.  ALL of my
tests have
been "normal."  When I suggest "neurologist" to my doctor, she just dismisses
me.  As with
all the other 7 before her.  I think the fact that I'm on an HMO has something
to do with it
to be honest with you.  I call myself "Walking Wounded" because I'm not in bad
enough
condition for any doctor to insist on further testing, so they end up just
putting me on the
bottom of the list.  A neighbor is a doctor, and he said when they work triage
they have a
scale in colors:  red is someone about to die, orange is someone exremely
critical, all the
way down to green.  Green is someone who has a head cold.  I think they treat me
like I'm
Green.

K2

--- In UNdiagnosedMS@yahoogroups.com, "rn4veterans" <Rn4Veterans@...> wrote:
>
> Hi K2,
>    I'm new to this group also! Have you had your Vitamin B 12 tested?
> Severe Vitamin B 12 Deficiency can cause a multitude of Central Nervous
> System problems....
> Just a thought
>

Handsome and Cool Bikers looking for fun!  Chat with them here:
http://coolbiker0194.googlepages.com/bikerboyz.htm

Hi,

My name is Carol and I have been tested for B12 deficiency and it was
a little low.  They started me on weekly B12 injections for this and
it has brought my B12 back to normal but none of my symptoms have
improved.  In fact I have still went down hill.

My symptoms started in August of 2004.  I had tingeling in my arms,
by December of 2004 I was using a walker.  I was tested for
everything under the sun, but came up empty.  I am now in a
wheelchair and started having seizures.  Only 3 so far, but enough
for a scare.  I go to a new neurologist on June 1.  I am so glad of
this because she only excepts hard to diagnose patients.  My doctor
says she has an excellent track record.

I have been tested for MS and they found 1 lesion in the brain and 1
in the spinal cord.  The one in the spinal cord measures from the 2nd
to the 6th vertebre with complete demeyelination.  I was told with
that great of length of open nerves is the cause of my mobility loss
and severe chronic pain.  The neurologist I was going to at the time
felt like I might have MS but not enough evidence to start me on
treatment.  So here I am with no answers.

Does anyone have any suggestions for me.  I am totally at my witts
end.

Thanks,
Carol Riley

Hi K2,
    I'm new to this group also! Have you had your Vitamin B 12 tested?
Severe Vitamin B 12 Deficiency can cause a multitude of Central Nervous
System problems....
Just a thought