I had what I considered a minor sore throat (no fever) in mid-Dec. '97
which had been going on for 3-4 days. On Fri. I noticed some numbness in
my left thigh which didn't really alarm me as I had been through sciatic
nerve problems in that area during both of my pregnancies. However, on
Sat. a.m. I woke up with the toes on my right foot tingling. By the end
of the day on Sat. I was numb from my waist (my lesion is at the T-7
level) to my knees and tingling from my knees to my toes and my feet were
SOOOOOO COLD! I called a nurse who said it seemed to be neurological and
not circulatory but definitely something was going on. I tried to wait
until Mon. to see a dr. (pretty stupid eh??) since I had not needed to
see a doctor in almost 2 years I didn't have anyone I could call and it
was new insurance, yada, yada, yada. Anyway, by Sun. night my feet felt
so cold that I told my husband I couldn't stand another night of it and I
went to the E.R.
So began the odyssey of finding a diagnosis. I had 2 lumbar punctures
(the P.A. in the E.R. couldn't get the needle in and after really giving
it the old college try - about 5 or 6 times, which I was ready to pass
out from to say the least, it was done under fluoroscopy). I had all of
the MRIs (to rule out MS - the brain MRI was normal but the back
obviously was not), the evoked response tests, etc. I was in the
hospital until Wed. night and by the time I left I could barely walk with
a walker. I was on 1000 mg. of solumedrol for 5 days and then prednisone
(a lovely drug) for the next couple of weeks as I was weaned off of the
steroids. I didn't even know what I had when I left the hospital - I
read it on my discharge papers after I got home and since my neuro. (he
was the on-call neuro dr. at the hospital) never explained anything to me
I was pleasantly clueless until I went to see my new neuro. He confirmed
the diagnosis and gave me all the cold, hard facts - including just how
lucky I am. I am not lucky - but I AM very blessed.
In the interim I had 2 episodes of pain in my knees (a prednisone
reaction I was told) the second of which kept me in agony and in bed
(finding as comfortable a spot as I could and then just not daring to
move) for the whole day until I got Vicodin for the pain. Has anyone
else had that kind of reaction to steroids?? Then the day after I
stopped the prednisone I started breaking out in an extremely itchy, red
rash that eventually covered me from head to toe - a reaction to Tegretol
(400 mg. a day) which then graduated to patches of hives for a week or so
- I think I itched/scratched for close to 3 weeks.
Today I walk around the house unaided but use a cane when going for
longer outings and am pretty much able to take care of my two daughters
(ages 3 and 22 mos.) except for bending down on my knees to give them a
bath - my husband still has to do that. I am pretty much confined to the
house since I am still under "no driving" restrictions (which is really
old by now) and since our yard is not fenced in and we live on a busy
street and I can't chase my little ones if they were to take off for the
road we are like mama bear and her two cubs hibernating for the winter -
too bad the weather here is so nice, it makes it that much harder to be
in the house all day. I am thankful that my case is considered mild as I
know so many of you are so much more seriously affected than I am, my
heart goes out to those who are and to the little children and babies who
are stricken with this terrible condition. I am on Neurontin and so far
don't have any side effects except for some weight gain. I am fortunate
that I am an at-home mom and run my own computer search business from my
bedroom - I don't have to worry about a boss wanting to know why I am not
performing up to par. I do get fatigued which I understand is all part
of the condition as well.
People try to understand but I don't really think they can unless they
have been there - or are there - and that is why I was so happy to find
the TMA (and Deanne Gilmur) and the TMIC. I do have my down times which
I try to keep to a minimum and mostly to myself - I believe that being
positive helps more than it hurts when you're trying to heal. My
thoughts and prayers are with all of you and I look forward to "talking"
with you in the future.
Lori (in Florida)
P.S. Sorry this first message is so long - I'll try to keep it shorter
next time - but thanks for reading it :-)
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