Hi I am Laura and I have just been dx'd with MS about a week ago.
Hoping someone can please help me understand how Copaxone will help and your
take on what might have contributed to my getting MS plus how to just work
through the pain & shock of being dx'd.
Thanks

http://www.novartisclinicaltrials.com/webapp/portals/MSClinicaltrials/

The last exaserbation, I had, started 3 1/2  years ago. The Solumedrol did
nothing to help me whatsoever, but I hope that it was worth the try? Hoping it
doesn't cause any other health problems as it is a strong steroid. Recently
experiencing a kidney stone and being put on a special diet because of that,
seems to be helping me more than anything that I have tried. Still, some days
are better for me than other days and I never know when the better ones are
going to hit, to be able to plan on doing anything. So far, my MS mostly effects
my balance. I have found that eating horse radish on lean meat and eating some
celery seems to help me with arthritic and MS pain.

One thing to remember the prednisone is not given to cure or fix
anything.  Only your body can naturally heal itself.  The purpose of
the prednisone is to possibly speed up the natural healing.  I have
found that my bad relapses have taken long times to show improvement.
I have put up with MS for over 10 years now and have had one relapse
where I did not take prednisone and a couple that I did.  The
prednisone cut about 4-6 weeks off the process.  I still had to
gradually come back but I did.  Hang in there.  It will come back.
Just work on doing things to get your strength back.  Keep a positive
attitude.

I would refer you to look up Dr. Vince Macaluso on Google or any other search
engine. You'll find pages and pages about him on the net. He is a neurologist
who has MS and takes this Tysabri. He highly recommends it. He touts it as
wounderful and gives it great feedback. I have been at his presentations and he
seemed like a down to earth great person to me... and I am now looking at taking
Tysabri too.

Hi, my name is Gwen. I have a long medical history that I wont bore
you with the details, however I have recently been told I might have Autoimmune
Interstitial Cystitis but still havent gotten a confirmed diagnosis yet and I
have Elevated Liver Enzymes which My hep doc thinks may be autoimmune related
also but he has yet to start me on any corticosteroids. Now I am exhibiting
symptoms which I believe could be MS. Autoimmune diseases run on my mother's
side of the family that includes 2 cousins who have MS. Here are the symptoms I
am currently having:
*Elevated LFT`s
*Migranes
*Trigeminal Neuralgia
*Glossopharangyl Neuralgia
*Jerking leg & arm movements especially at night when lying down
*When turning my head it jerks like someone with parkinsons disease
*Numbness in my fingers and toes
*Swollen finger joints that feel tight
*Sometimes conversations sound scrambled
*Some memory  loss - I forget the names of people and places, recent things & it
takes me a while to try to remember them


I have an appt with my regular doc soon and I'm going to demand that something
be done. There is something wrong with me and I want to know what it is! Im
scared! Any advice as to how I should proceed? Could this be MS?

Hi all !!
I'm new to this group but not new to MS. I've been diagnosed with MS for about 6
years now and currently having one of my worse exacerabations (been 4 years
since the last - so I am happy for that). I just completed a 5 day IV course of
Salumeteral 1000mg/day - I'm a little discouraged due to the fact I'm not
feeling any improvement.  Is this normal?   I start the taper down today and
will be doing that for 12 days. I just really want to start getting some feeling
back in my lower body. Do any of you have any words of wisdom or encouragement.
I may just need to be more patient!!!

Thanks
Christy

Will anyone with significant experience with Tysabri please
post about your experience. I am a person with MS now for more than 31
years and am now looking at taking Tysabri.

Thank you in advance...
mcc

Thanks so much for getting this group up and running again.  I much
appreciate getting messages, but I won't always chime in.  I hope that's
OK.  I'll be happy to provide help and support any time I can see a way to do
this.

Best to all,
"gaild1975"

Hi
My name is Terry, also with MS going on 3 yrs now. Mother of 5
girls, grandmother 4, married 24 yrs, can't work anymore. I manage a support
group and stay home alot spending my time mainly on my computer, thank goodness
for that. I use a cane. and I take a daily injection for my MS among
medications.

Hugs ~ Terry

Hello!  This is my first post.  My name is Linda and I was diagnosed
with MS in April. I am still in the "research" stage - where I am
researching as much as I can about this disease!

I am looking forward to gaining information, insight, support,
advice... etc. from others who are going through the same thing I am.

Hi- I am a 35 year old mother of three that just with in the last two
weeks has been told that I have MS along with a list of other medical
issues. I am scared and I do not know much about MS. I had no idea that
it would happen to me. I have pain in the right portion of my head and
face that is blinding at times. My hands and feet stay numb or
stinging. I can not function with my hands half of the time. Always
dropping something or just plain can not tell if they are still there.
I have many burns from trying to cook and did not know I burned myself.
I get up to walk sometimes and my feet are dead weight or just hurting
so bad it is unreal. I am now experiencing pain on my leftside down my
arm and neck. Theys said it is from the MS. I am so confused and do not
know what to expect. I am so scared. I am also 350lbs and not even able
to exercise due to the pain I have. I know it is important more than
ever to lose the weight but I do not know how to treat each day
anymore. I do not think it has hit me yet that I have this disease or
what to even expect for my future. I take care of my disabled mother
what is going to happen to me or take care of her if I can't. Sorry, I
can not help the emotions and I do not know what to do. Thank you for
your time and I hope to learn a lot from each and everyone of you in
this group.

Monica

Hi there, my name is Terry and I've been dx'd with MS for 2 yrs now so I know
what many of you are going through. I was wondering if anyone here has been put
on methadone?  I have a friend with both MS and Lupus and she was put on
methadone for pain. What is your opinion on this?

I have secondary progressive MS and the neuro claims the pain+fevers I also have
is severe Fibromyalgia (every point is painful) but the Rheumatologist says only
a smaller part of it could be that. Unfortunately neither can help. I've tried
pulse therapy with steroids and may as well had a chocolate binge.

Every symptom you describe I've had frequently over the last 12 years. I only
have 7 teeth top+bottom left in as the pain used to last for months with only
brief respites. Having them removed (all healthy)relieved the severity but not
completely the pain. I still get "ghost toothache". The burning+fevers I also
have often. I used to get frightened but over the years with other symptoms
joining the group I go with the flow. Sometimes laid up, other times doing what
I can to enjoy things crafts, gardening on my bot, reading, seeing friends. If I
overdo it I'll start burning so rest for a while.

Take care, good luck, Sandra in NZ

I have had all of the same things and you are the first I remember hearing of
like me. I have had MS for 2.5 years now. I was on every medicine possible for
the trigeminal neuralgia on both sides of my face. The burning in my left foot,
thigh and butt cheek were unbearable as well. Nothing worked for me without
terrible side effects until the doctor put me on Lyrica. I highly recommend it
as I was suicidal until I tried it. I take 3 a day and my MS is manageable now.
I'm also on Effexor (anti-depressant) and Copaxone shots. I have been stable for
about 6 months. My face still feels like someone is shocking me off and on
daily. My legs still get heavy and walking any distance becomes difficult as the
burning gets worse and my left foot starts flopping.  I drop things and fall
sometimes. I have double vision and blurry vision which comes and goes. My
neurologist tested my eyes and said my reaction time from the eyes to the brain
is slow which probably causes my eye sight troubles. I'm 43 years old. I would
love to have an email buddy with similar symptoms and you seem to have similar
symptoms.  Please give my your email address or take mine: dotjiris@...

   Take care, Dot

Hello
My name is Dan and I am 43yr. I live here in Georgia and I have a
14yr son who lives with me. I have had MS for 4yrs now. I have been
divorced about the same amount of time. I am a director of the in-house
shows at our theme park called Wild Adventures. I have another job at
the park also that affords me the opportunity to send MS patients and
their families to both of our theme parks and Walt Disney World for
vacations. I believe that just because we are sick does not mean we
should have be able to have fun too. I joined theses group in hopes of
meeting some new friends. For some reason it is very hard to meet
people. I do not hide anything I just tell it like it is. I beleive
that you can never have to many friends. Please feel free to ask me
anything and if I can answer it I will be happy to. So if you are
looking for a friend just to talk to about anything I'm here!

Take care my friends and look forward in hearing from you soon.
Dan

Hello all -

Over the past few years I've had some symptoms that have me a bit
concerned, and I thought I'd see if anyone else came up on MS this
way.

It started out with some brief episodes of double vision, which I
dismissed as eyestrain.  Then I started having occasional bouts of
pain in the teeth, without there being anything wrong with them.
First one side, then the other - upper and lower.  Didn't last very
long, but boy did it hurt.  And I ached all over.

Over time the aching got worse, and the occasional tooth ache
settled into pretty classic trigeminal neuralgia - on both sides,
which I understand is unusual.  My toes started burning, on both
feet, and blood work was done for diabetes - nope, blood sugar is
fine.

This past winter I got a roaring case of the flu, and my entire body
hurt and burned like someone had set me on fire.  After that passed
on, I had a little trouble walking because my legs felt heavy
and "stupid".  I got better for a while, and all the wierd symptoms
faded away. But lately I've had two bouts of this all-over burning,
both times associated with a cold coming on.

I am trying to figure out what might be going on, and whether I
should talk to a neurologist or rheumatologist first.  So, I wonder
if these wierd, diffuse symptoms sound MS-like or not.

I'd be happy to (virtually) hear your input, because I'm stumped.

Katherine

By Becky Orr
borr@...

CHEYENNE - Ann Romney, the wife of Republican presidential candidate
Mitt Romney, will pay Cheyenne a visit on Saturday. She will be here
for CFD parade. She will hold a "meet and greet" starting at 8 a.m.
at the ERA building, 1621 Central Ave., said Sarah Pompei, deputy
press secretary for Regional Media Romney for President. She is
expected to speak around 8:30 a.m. "Mrs. Romney is looking forward to
talking to Wyoming voters about her husband, who he is as a family
man," and a little bit more about the personal side of the candidate,
Pompei said. "She is looking forward to participating in the Frontier
Days activities and is excited to come to Wyoming." Mitt Romney is a
former governor of Massachusetts. Kim Andereck, a businessman in
Cheyenne, is involved with the Romney campaign in the Cowboy State.
The visit by a U.S. presidential candidate - or at least his spouse -
is an opportunity that people in Wyoming don't often get, he said.
People can ask her why they should vote for her husband and feel like
they're getting a first-hand answer, he added. The Romneys have been
married nearly 40 years. They have five sons, five daughters-in-law
and 10 grandchildren. Ann Romney was the governor's liaison to the
White House Office of Faith-Based and Community Initiatives, based on
information on the Mitt Romney Web site. She was diagnosed with
multiple sclerosis in 1998 and has volunteered time to raise
awareness of the disease. She has won the MS Society's Inspiration
Award.

Hi All,

Like Jill I have recently been given a "possible MS" diagnoses, just
this week.  Unlike other folks I've read on here my first major
exeacerbation began the 2nd week of June 2007 when I began having
double vision and I've already got a Dr willing to say it looks like
MS.

In June my GP sent me to my opthamologist who said it was
neurological, possibly MS or a tumor,  and wanted an MRI. The MRI
showed ">5" lesions. I then saw a neurologist and had a spinal tap
which came back with oligoclonal bands in my fluid. He has scheduled
am appointment with me to see an MS specialist, Dr. Sharon Lynch, at
KU Med center in Kansas City, anybody else have experience with her?
The appointment is in October!!!! I Want to see her NOW!!!!

There is history of MS in my family. My father had RRMS and a cousin
on my mother's side had progressive. Maybe because of this it is
easier for the Dr to say it's MS rather than tell me I'm nuts.

Like Jill I was scared s#&*less when I heard the word MS, although I
do think the word brain tumor scared me more. The symptoms I was
experiencing were also scaring the s#&* out of me. I was seeing two
of everything unless I tipped my head just right, I felt like I could
sleep 24 hours a day, I seemed to be listing to my left when I walked
and I felt like a bobble-head if I looked around, or one of those
google eyed dolls. Then the muscles in the right 1/2 of my face quit
working, my right nostril went flat, smile lop-sided and lower eyelid
sagged making that eye look constantly suprised. I also repeated
things, "lost" words, couldn't concentrate, seemed to lose small
motor coordination in my right hand, and have numbness and tingling
in two fingers of my right hand. The facial paralysis seems to be
leaving (YEAH), and the double vision is not nearly so bad (I don't
have to wear an eye patch when I drive), but not I'm having tics in
my left eyebrow and under my right eye.

So at times I'm still scared. I've been praying a whole lot more and
that's helped me. Reading my list of symptoms I started laughing,
this is the blackest of humor, but it is humor.

Okay Jill, here's is how I am looking at things. First MS can be a
miserable nasty pain in the a$$, but in most cases you will live.
There are drugs that have been discovered in the last 10 years that
have proven very effective it containing the damage MS does, I am
ready to start taking Copaxone today. I keep telling myself that the
glass is half full.

Also Jill, I'd be interested in hearing about what's going on with
you, so please share. Have you seen other neurologists? Or a
specialist?


Julia in Kansas

Hello,
My name is Samantha.  I live in Colorado with my husband Todd and 3
great boys, Ty (11), Tanner (8) and Tegan (4).  We have a small (40
acre) ranch where we raise cattle, goats, horses, chickens, ducks and
llamas.  I love animals.

I was diagnosed in 5/04 after my very first symptom,  (my feet going
numb).  It has been a rough go.  I started with RRMS but I think I
have graduated to the next level (no official diagnosis of this but
have just steadily gone downhill).  I was doing good until I got into
some pesticide in Feb.  Iwent from walking, into a wheelchair in
about a month, loss of balance and stiff, numb hands.  I was told I
might have pesticide poisioning so I went on a juice fast and saw
great things.  I got out of the wheelchair and was walking w/o
assistance but I am extremly stubborn or stupid, LOL and helped give
a pesticide dewormer to our goats and backslid into the wheel chair
again.

My family is great, I thank God for them everyday.  I rely heavily on
my faith and I don't think God gave me MS but I know I'm to do
something with it.

I look forward to meeting you all.
Samantha

It took me 2 years to be diagnosed with symptoms of gait, 1/2 of my body was
numb, straight down the middle, fatigue,complete loss of left arm/hand, eye
problems and some nuros told me I had a psychological problem so deep that I
didn't even know I had it.

Hang in there for answers and keep going.

I am not sure why your neurologist is stumped that the symptoms appeard so
quickly, same happend to me, woke up one morning and I was numb and then
intensified as days went on.  It did peak and complete numbness and then
gradually subsided to disappear about 1 month or so later.  Here in Canada it is
hard to get a diagnosis based only on symptoms.  I had the spinal tap, the
evoked potentials and the MRI and all came out normal the first time.  Symptoms
began appearing still and because my tests were negative they wouldn't believe
me, but the neurologist I have now says it is quite common to have negative
results but have MS symptoms.  Only once I had postiive test results and 2
showings of MS symptoms can they diagnose you here in Canada.  2 years later I
had another MRI and it showed 7 lesions. Started Copaxone and have been pretty
good since then - I have symptoms but not attacks (2 in last 4 years).

My advice while in limbo is get as much knowledge as you can about MS
and when you see your neurologist, be assertive and fight back with your
knowledge, wished I had done that.  Took me 3 neurologists
before one would believe me. hang in there and don't give up..it is
stressful not knowing what is going on.  The neuro I see now told me
that from the first symptoms and negative MRI findings to the next 2
years, something will show up if it is MS.  If you have testing 2 years after
your first negative results and nothing shows up again, it probably isn't and
won't be MS.

Take care and hang in there.
Max

My condition started the first week of April (this year) when I awoke
with one foot slightly numb.  I didn't think much of it, thinking I
must have slept on it wrong and it was asleep. The next morning when
I awoke, my whole left leg, foot and hip were slightly numb. It
seemed to continue to get number for a few weeks, then pretty much
stablized (but it did spread to my other foot and ankle). I was in
progressively worse pain (basically in the area where one
sits), right where the joints meet. I could definitely notice as it
got worse that nerves were involved. Since April the pain was pretty
bad and I iced a lot in those areas. But then only 2 weeks ago the
numbness spread all the way up the other leg and hip area. I also
quickly developed some dizziness (unsteadiness). I was really worried
and went back to my neurologist who was able to get my spinal
angiogram moved up (which I had done this past Monday). The results
found no dural fistula (or whatever they called it that they were
looking for). My symptoms have not improved except that I am in less
pain because I am not working now (my boss conveniently fired me last
week before my procedure). I have been resting my legs and feet a lot
so that is helping. My mom flew out yesterday from out of state to
help me out for awhile (thank goodness). I guess my doctor is a
little stumped for a definite MS diagnosis because my onset of
symptoms came on so quickly and they are not typical (I guess) of MS.
I think that is why I'm kind of in a limbo stage of diagnosis of MS
or not. That is why he probably said that if any new neurologic
symptoms develop that it might indicate that I do have it. I will see
him for an appointment this Wednesday, so I am going to ask him if he
thinks we should start treating it or not. I have been reading a
little about the different self injections available. Any personal
advice from anyone who has used the different types would be helpful
in case he he does decide for me to start treatment.

Thanks again,

Jill

Hi -

Many of us have gone through the same frustration and uncertainty. Try no to get
upset. That will only further aggravate the situation. Always remember you are
not alone. There are many options now for treating MS  and  over the counter 
options for treating symptoms. I went through similar uncertainty for 2 years
before being diagnosed. That was 18 years ago - and I'm still hanging in -
praying for a cure each day.  Stay strong and keep a ready smile on your face.
Have as good a day as you can everyone. There are always others far worse than
ourselves.

Loni

Hi,

First I would like nothing more than to calm your fears.  When I first found out
I had MS, I was very angry and scared as you are right now.  It took me awhile
to come to terms with having MS but once I did I found out that life is precious
and that we should live each day to the utmost.  I have now been in remission
for five years now with minimal symptoms as well.  Through support I have met
people that got MS from an early age and have also been in remission for over
twenty years.  Each person has found out what combination of treatment works for
them best in order to stay in remission and go on with their lives.   One must
remember that having MS is not a death warrant and that we can go on with our
lives.  We might have to make a few changes but life does go on.  You will find
that this is a wonderful group and very informative.  I found that all of my
questions are answered either through this support group or from my MS meetings.
Remember that we are all here for you whenever you need us and that time heals
all wounds.

Regina

Hello My name is Juanita.  I was first diagnosed with MS at the age of 15. 
Currently, I am a 34 year-old mother who recently started to think about the
effect of my condition on my daughter and future children.

I am a very optimistic, happy woman who has and is still enjoying a very active
life.  However, I have known and met mothers who are struggling because of
relapses and depression.

So, I decided to write a paper about this issue for my doctoral program and nned
some research help.  Specifically I'm interested in learning about your child
rearing skills, your kids' responses to you as a parent with M.S., challenges
faced when dealing with teachers and other educational providers for your kids,
and the skills which your kids acquire because they are dealing with a parent
with M.S.

Juanita

Hi,

   I am among those who have never had a defnitive diagnosis. In a way it's good
to have a dx because then you know for sure, but in another way it's good
because you may NOT have MS. MS can be so many different things to so many
people, but you made a good step by writing to us because we're very supportive.

   Do you have any lesions on your MRI? I myself am stuck in limbo of possibly
never knowing because I am allergic to the MRI dye and can't have anymore to
compare. My spinal showed nothing a few years ago. I don't want to volunteer to
have THAT done again. The important thing is to have a Dr that is willing to
treat your symptoms and listens to each and every one of them. The waiting
"until you have another attack" can be fearful because who wants to go thru all
that again when they could have been giving you medicine all along? I had
drooling on the left side of my mouth, restless leg syndrome, incontinence,
couldn't use my left leg for a while, pins and needles in legs and arms, felt
like my body was incased in concrete and couldn't even open a soda can, extreme
exhaustion, used to repeat my sentences over and over. On a good note, since I
am not "under attack", I only have some residual symptoms like the restless leg
which doesn't seem to go away, and pain in my left  leg. Hopefully I will never
go back to as bad as I was because it seemed like a 15 on a scale of 1-10.

   Since your Dr said you have to wait until something else happens I would
assume you're a little bit better? I think we're all different in how long it
takes for another attack to happen. I put all my symptoms down on paper and then
went back to my early childhood. My attacks seem to happen every 2-5 yrs with
the symptoms getting worse every year. 4 years ago was the worst one and when I
started my testing. Took me a year just to get to the possible MS testing, and
that was after they had ruled everything else out. What else have you been
tested for?

   Tali

Hi, I have M.S.and am looking for support!

Hi,

I have been informed by my neurologist that I may (or may not) have MS.
I have had many tests (including several MRIs, a spinal tap and, most
recently, a spinal angiogram this week. I am scared, confused and angry
all at the same time.  My neurologist said to me in an e-mail today...
"At this time I am not saying that you definitely have MS. However any
evidence of new neurologic problems in the future could indicate that
you do have it."  I have an appt to see him again to discuss what the
next step may be this coming week.  Any information I could get from the
group would be very helpful in my attempting to find out more about MS.
I feel upset mainly because I don't know for sure what I have.  I can
provide more information to anyone who is willing to help.  Thanks in
advance.

Jill (koalatbs)

Thank you everyone for your thoughts, experiences, etc.  I had
already planned to talk to my doctor, but just wanted to know if
anyone else had had the same thoughts.  When I asked my doctor about
the medicine in the past (I wasn't having any side-effects, just
curious), he basically said that it wasn't hurting me so just keep
taking it.  The various companies were constantly trying to find
improvements/a cure...

I had been religiously taking it every day, but when it got to the
craziness of packing and moving, I missed a couple of days - and
that's when I realized I had more energy, etc. on the days I forgot
to take the medicine.  It could have been coincidence.

I'm not saying the medicine isn't working, it may be working
perfectly, just a little curious if others were having some of the
same symptoms.  I know it effects everyone differently, but just
curious.

Someone mentioned that 50% of the way it worked (or something like
that) was mental/how I approached it (I can't see the exact words
with this screen open).  I agree completely.  My attitude has always
been "get up, take the medicine, and live my life to the fullest".

Again, thank you for everyone's thoughts and I hope everyone lives
each day to the fullest - that's what I plan to do!

Toni