I was diagnosed with TM 4 years ago. My background is similar to some of you
who have previously shared their experiences.
Background: Prior to my TM, (about 6 mo.) I began experiencing extreme
fatigue after vigorous exercise, in addition, I had a nagging back ache
between my shoulder blades and developed severe sinusitis that would often go
into bronchitis.
During the month of April 1993, continual bouts of fever, sinus and
bronchitis nagged me. Never really had any serious illness except when at 19,
woke up with a rash, skin hurt for a year (ex. the water beating on me while
taking a shower) and muscle weakness. GP had no dx. Lost my cultures so don’t
know if it was strep or not. Got better and never thought about it until
April 26th, I woke with numb index and middle fingers on both hands and a
ring of numbness that ran around my ribs just underneath my breasts. I had
ran 4 miles the day before. My initial reaction was a pinched nerve in my
back, annoying put livable. The numbness didn’t get worse but it also didn’t
get better and the fatigue was overwhelming. The next day, Sunday, we awoke
to get ready for church. I was feeling "off balance" and had numbness from
right below my collar bones to my toes and including my arms and hands.
Went to ER, had CAT scans and doctor told me dx was probable MS and should go
to see my GP so he would recommend a neurologist. Next day, woke to more
intensified numbness, more weakness and couldn’t stand to have my clothes
touch my skin—really obnoxious feeling. My husband, a very aggressive person
by nature, decided that they only person I was seeing was someone at the
Cleveland Clinic, we’re fortunate to live 1 hour away. After much argument
he got me an appointment that day (the earliest they had was 4 weeks away).
As day progressed my muscles are becoming stiff feeling and I was
experiencing those shocks down my spinal cord when bending my head.
Saw the doc. He couldn’t give dx because I still had a considerable amount
of strength. Made an appointment for next day for MRI and Doc’s. Next day
numbness was really getting bad, would have like to have not had to wear
clothes that day! After MRI, saw the Doc, he noticed increased weakness and
my whole body felt swollen (even though it wasn’t) He said I probably had GB
and put me in hospital for further tests. That was my birthday, I turned 34
in the hospital that year. I had More MRI’s, At least 1 or 2 blood test
every day, spinal tap and co-ordination tests – I joked that I wouldn’t pass
a drunk driving test if pulled over!!
By night, could hardly feel my hands and feet, they felt like balloons. Doc
gave me IV units of cellmethyelisone (SP?) My spinal fluids came back OK,
blood tests OK. I believe he said that yellowish fluid color would indicate
GB and cloudy color would indicate MS - don’t quote me on this it’s been
awhile. Spent a week in hospital and left with a diagnosis of TM or Viral
Myopathy. I haven’t heard anyone discuss Viral Myopathy but was told it’s
the same thing.
Regarding the virus connection many of you have discussed, this what my
doctor told me. For some reason after my bouts of virus infection, my immune
system over-reacted and rather than attack the virus present in my body, my
immune system attacked my nervous system and began destroying it. So if this
is true,(who knows), then it is not really the virus that causes the problem
but an immune system gone haywire.
I never lost the ability to walk, even though it was very difficult due to no
balance and legs that felt like wooden pegs. The other problem I had was my
rib area that felt like I had a belt cinched too tight and made breathing
difficult. After my revoked response test came back negative the doc’s sent
me home with a prognosis of 3 month recovery. It took 4 months to return to
50% and 1 year to feel semi-normal again. Someone mentioned (I think Mimi)
that her doctor discouraged exercise. Mine was opposite he told me to do as
much as possible and that the more I pushed myself the faster my recovery.
At first I was only able to do my own grooming - very tired all the time.
Gradually worked to even washing a load of clothes - that really made me
sweat! I kept doing things even though it was uncomfortable for me and would
stop when my "rib band" would get too tight.
The only drugs I was given after the hospital was prednisone for a three
month period. My improvement also happened plateau’s. – no improvement for 6
months and then all of a sudden, more feeling would be evident or the
numbness in a particular area would feel better. It took me 3 years and I
have made it to 90%. I can do most things within limits. I have good days
and bad. I tell everyone my good days have finally gotten to be more
numerous than my bad! My attack come on much slower and therefore for which I
am fortunate as the damage I experienced is much less than those I’ve read
about here. The fact my husband got me treatment at a facility were I could
be treated aggressively and doctors who listened to what I said and took me
seriously helped. There was another gentleman here in town, I met afterwards,
who went to several doctors before being take seriously, he is similar in
prognosis as me. One doc even told him to see a psychiatrist!?!.
I found this board because I have had several flu bouts again this year and
my TM is acting up with more severe numbness than I’ve experienced in awhile.
Haven’t been to the doctors since my 6 month evaluation. He said I didn’t
have to come back unless I got worse or a new condition showed up otherwise
there wasn’t anything else he could do. Here are some of my own personal
observations at controlling my own TM. 1.)Stay as healthy as possible, 2.)
free from illness and alleviate as much stress from your life as possible,
and 3.) get 8 hours of sleep each night, when a of these factors are present
my numbness and fatigue intensify. I do want to mention to those of you
taking prednisone, that the steroids do weaken your immune system and make
you susceptible to infections. If told that, I would have avoided people who
are sick. This is not to downplay the benefits of taking steroids because
these drugs helped stop the damage to my nervous system.
After affects: Almost always numb hands. My feet ache especially when I’m
tired. I know it’s going to be a bad day when I wake up and they feel like
that. I am able to exercise when I’m having good days. At first, I began
walking ahd when done I had rubber band legs – at least that’s how they felt.
Kept it up anyway and gradually worked back up to running again. Last 3
months no exercise as this bout the flu has me feeling weak again. Will wait
till it passes and get back at it. I feel with this disease we almost have
to battle with our own bodies to get better!
I know this is long and I thank you all for the opportunity to share. It is
hard for people to understand because I never "looked sick". How is a sick
nervous system supposed to look anyway? It is great to have people who
understand and share info with! Finally!
Thanks, Beth Shears