Re: my story

ann lindstrom (allindstrom(AT)hotmail.com)
Mon, 01 Mar 1999 09:40:51 PST

Nancy - welcome to the group. Our histories have some real
simularities. My problems started in the fall of '94. My inflamation
was at C1-C2. I too had a biopsy. Do the doctors think that some of
your symptoms could also be the result of the biopsy? Mine left some
permanent damage. When I was first released from the hospital I had
numbness and tingling from my neck down, except for my left hand and
arm. After 18 months the numbness and tingling was only in my feet and
my right hand. That's pretty much what I was left with. I have had a
couple of flare ups. I have been on Neurontin for a couple of years. I
need to watch that I don't get over tired. Take care of yourself and
let us know how you are doing - Ann

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my name is nancy and i'm 48 and a mother of 5 sons ages 5-15.
my first onset was on feb. 27,1998. i bent over in the shower to pick up
a toy
and when i stood up i went numb from the waist down. a week later i
went numb
from the waist up to my neckbone. at first my gp thought i had a pinched
nerve
and sent me to orthopedic dr. with no results. i then went to a
neurologist
who examined me and gave me an mri which showed a growth from c1-t6.
they then
sent me to a neuro surgeon who confirmed it appeared to be a tumor
inside the
spinal cord. i had surgery and a biopsy done which which came back
infamatory
tissue. i was hospitalized and given a steriod drip to reduce the
inflamation
2 different times. i then went to uab kirklin clinic and was diagnosed
with
tm.
my symptoms are: numbness from my chest down to my feet(feels like a
novacaine)
pins and needles all over(some days worse
than
others)
severe pain in my upper back(if i didn't
take
neurontin i'd be

hanging
from the ceiling)
when sleeping my legs go so dead on me they
feel
like lead
my dr. says that eventually the majority of these symptoms will go away
about
75-80% within 2 yrs. if i don't develop a setback. so far so good. i'm
moving
around alot better now and upon his examination he sees a slight
improvement.
thank God i'm not paralyzed. i have lost no control of my bladder or
bowels
although i'm numb inside too.
this is a crazy disease and a complicated one since it seems these drs.
don't
have a cause or a cure for this. the underlying cause seems to be viral
even
though i wasn't sick prior to onset. in fact i rarely ever get sick. i
was
tested for every other disease imaginable and have had 2 cat scans and 9
mri.
i've had blood work done out the wazoo and brain tests done and
everything
negative.
i would like to know if anyone has experienced any improvement or
recovery
with this weird thing and if so how long did it take and for how long
have you
been better?
i know i'm quite fortunate that it could be worse but i'm sure tired of
this
as it has slowed me down quite a bit keeping up with the kids and all
the
volunteer work.
look forward to hearing from anyone.
good luck and god bless. nancy

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