I too was under alot of stress when I came down with this stuff - my
dad, close friend and dog were all dying. ARGHH. They have all been
gone for a few years now. Symptoms do get worse with fatuique and
stress. I have had to learn how to pace myself and find ways of doing
what I want to do. Like you, I am left with tingling and numbness in
my feet and hands - though my left hand is in pretty good shape. If
there is something I really want to do that I know is going to make me
tired, I plan to have a quiet day the next day. I don't clap anymore -
just smile and nod. Clapping is to big a toll. Hang in there - with
the research going on, I expect us all to get together for riotous
dancing some day. Ann
> ----------
> From: Susanmllr(AT)aol.com[SMTP:Susanmllr(AT)aol.com]
> Sent: Friday, September 04, 1998 7:37 PM
> To: tmic-list(AT)eskimo.com
> Subject: TM, encephalomyletis, MS, and recurring symptoms
>
> Hello
>
> My name is Susan and I was diagnosed with TM in April of 1997. A few
> days
> before my attack, I had flu-like stomach pains and dizziness. Just
> after that
> occurred I started to have some numbness in my left arm. Two days
> later I was
> at work and in a few hours my left arm was usless. It then went to my
> right
> arm and my the muscles around my mouth. I thought I must be having a
> stroke.
> I am only 42. By the time I got to the emergency room, apparently my
> feet
> were numb as well because I could not feel the pins that the
> neurologist was
> sticking in me. After an MRI, he sent me to intensive care with what
> he
> thought was either Guillian-Barre or Transverse Myletis.
>
> The next neurologist did an immediate spinal tap and diagnosed me with
> TM.
> The second day I was put on heavy IV steriods. By the third day, I
> could not
> use either of my arms and could walk only a few steps with alot of
> help. No
> one had heard of this condition and I had interns, immunologists,
> nurses,
> phys. therapists and the like all quizzing me on what this was, where
> I had
> been, what had I been exposed to, ect.
>
> They guessed that this attack was born by a virus but they were never
> able to
> isolate it. I had been under a great deal of stress the previous two
> weeks. I
> was working twelve hour days, getting very little sleep, dealing with
> stressful situations at work -- and I had just put my Golden Retriever
> to
> sleep. I think my immune system just went on a holiday and the virus
> broke
> in. Whatever the case, it left its callling card.
>
> I was moved to a rehab facility the next week where I spent the next
> eight
> weeks.
> I was on steroids for the first three to four weeks. I think this may
> have
> been part of the reason for my extreme weakness -- perhaps steriod
> myopathy.
> Afer the steriods they put me on Klonapin, a drug that causes muscle
> weakness.
> Go figure. Anyway, I finally asked them to take me off everything.
> Once I
> was "drug-free" I started to improve. It may have been the timing or
> just a
> coincidence. Whatever the case, I was glad to get out of that
> wheelchair.
>
> A new neurologist suggested that I go to the Mayo Clinic in Rochester,
> MN for
> another opinion. I went there in July. The swelling was in the
> Cervical area
> of my spine and in my lower brain stem. They called this
> encephalomyletis.
> Sort of a "catch-all" phrase. They told me that I had about a 10%
> chance of
> developing MS at that time. They gave me no idea about improvements
> or what
> to expect. No one seems to know the answer which is the most
> difficult part
> about this condition.
>
> I have not improved very much since about the second or third month of
> my
> illness. Stress definitely plays a major role in my condition. Even
> minor
> stresses, which most people don't even notice if healthy, can cause my
> symptoms to rear their ugly heads. I am shaky most of the time. I
> have
> tingling in my hands, feet and lower legs. I can't think or
> concentrate like
> I used to. I have a constant weak feeling in my legs and arms.
> Yesterday, I
> went to an event where we had applaud constantly. I found that I had
> to stop
> at about person number five. My arms were shaky and I did not have
> the
> strength to clap any more. My legs are similar. I can do only so
> much, and I
> start to feel like overcooked noodles. It is frustrating because I
> want to do
> so many things, and I constantly face the dilemma that I don't feel
> like it.
> Does anyone else out there have similar feelings?
>
> As I mentioned, it has been over a year. Just recently, I have had a
> significant downturn in my progress. I fear that it may be MS. I was
> always
> able to handle the TM because I thought it was temporary. MS is with
> you for
> life.I had some nerve conduction tests yesterday and see the
> neurologist in
> the morning for the report. I would like some definition on this, but
> not one
> that includes MS.
>
> I am so glad to find this support group. I have not even tried to
> talk to
> anyone about this for a year. I now admit that I am afraid of what
> might be
> ahead. It's good to know that there are people out there that truely
> understand the fear and the uncertainty this condition presents us
> all.
>
> In the last year, I have had an entire lifetime of stress. I have
> been
> paralyzed, lost my father, and my husband and I had a falling out with
> our
> business partner and have lost our jobs. I am not soliciting sympathy
> but
> share this only because the significant role I believe stress plays on
> this
> illness. I would like to know if anyone has found a good solution to
> dealing
> with major and minor stresses in addition to the same ole diet and
> exercise
> route.
>
> Thanks for listening. My heart, my thoughts, and my prayers go out to
> every
> one of you.
>
> susan
>
>