Re: Awaiting Diagnosis

On Feb 1, 10:42 am, Mary Anne <gabi...@xxxxxxxxx> wrote:
On Feb 1, 12:39 am, Mary Anne <gabi...@xxxxxxxxx> wrote:



I went to the hospital at the beginning of January for what seemed to
be stroke-like symptoms (vertigo, facial numbness, couldn't walk) and
the doctor said she didn't think it was a stroke after all the
tests==  that she thought it was MS.  I knew absolutely nothing about
the disease - now after lots of research I know much more.

I went to a clinic specializing in MS and the neurologist said my
brain lesions don't overwhelm him as looking like MS but that combined
with my detailed medical/life history it may be MS.  I am having an
MRI of the cervical spine to look for lesions there and failing that,
he wants to do a spinal tap (which scares me more than anything).

Actually an MS diagnosis would almost be a relief, as it would explain
so many symptoms over the years that I toughed out for fear any doctor
would think I was nuts ("what do you mean you can't swallow?").

So I guess I have to wait a bit, but in the meantime I am trying to do
research on the medications I may have to take.  My question is - with
all the bad side effects of the interferon drugs, why does anyone use
them when Copaxone appears to have so few side effects?  Am I missing
something on the effectiveness of Copaxone over the interferons?  I
suffer from severe depression and get flu like symptoms exactly 48
hours after every flu shot, and given what I've read from others I
worry about taking any of these meds.

any opinions or points I should consider?

Thanks folks.  Whatever happened to me in the beginning of January, I
am taking a long time to recover from it.  I don't walk as well but I
can't sit still, can't sleep and my face feels like a crazed dentist
keeps shooting novacaine in different spots every hour.   An accurate
diagnosis seems a long way off today as I sit or pace and watch the
rain.

Whatever it is, I don't want it to stop me or to sit and wallow in
pity, but for today I just can't get moving.  Hopefully that won't
exacerbate the brain atrophy he saw, but I don't have  a lot of choice
in the matter....the legs say NO!

Greetings Mary Anne,
Gosh, reading your story made me recall my horror show in November
2004. There I was, standing on a busy corner in downtown San
Francisco when suddenly a warm, electrical buzz zapped my whole right
side. The sidewalk began to tilt from side to side. "MY GOD, I AM
HAVING A STROKE!!" Well, after many tests (including a very painful
spinal tap w/ a brain splitting headache, sorry to say) my Neuro of 7
years said I didn't "have anything!!" He wrote me a prescription for
a cane and out the door I went bumping into walls along the way. My
face was very numb and my right leg was kooky for months. After
several months of existing in wait-n-see land, I finally switched
Neuros and he took one look at my MRI and said, "You have multiple
sclerosis my dear." Finally I had a context for all of the years of
anxiety, fatigue, numbness (you know the drill).

I tried Copaxone and had a very unusual reaction in the area of
fatigue. I tried it on two different occasions and my fatigue
escalated to new heights. So I am now on Rebif which I take 3x per
week. It does leave me feeling a bit "hungover" so to speak. I am
not sure if it's working but I do it anyway. I think Copaxone is
easier on the liver with less side effects. There is the issue of a
daily injection and some people (like myself) get itchy welts.
Lovely.

For my fatigue I have started taking 50mg (low dose) of Provigil.
What a miracle drug. I can actual do stuff again.

My advice to you is don't wait for the doctors to give you a
diagnosis. Keep pressing them. Get SECOND and THIRD opinions. Also,
get copies of all of your medical records and a copy of your MRI for
your files.

Please feel free to email me if you have questions. I have helped
several other folks through the MS hole, including the disability
game.
Much kindness and peace as your find your way through this health
challenge.

Rebecca


.

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