Path: utzoo!utgpu!news-server.csri.toronto.edu!cs.utexas.edu!yale!bunker!hcap!hnews!129!34!Gary.Bewell
From: Gary.Bewell@f34.n129.z1.fidonet.org (Gary Bewell)
Newsgroups: misc.handicap
Subject: M.S. flare-up
Message-ID: <15245@bunker.UUCP>
Date: 30 Oct 90 04:15:28 GMT
Sender: wtm@bunker.UUCP
Reply-To: Gary.Bewell@f34.n129.z1.fidonet.org
Distribution: misc
Organization: FidoNet node 1:129/34 - ZONE 8 ECHO GATE, Pittsburgh PA
Lines: 62
Approved: wtm@bunker.UUCP

Index Number: 11363

Hi Aaron,

Like you I have M.S.

My reaction to your message is to say 'Dump the neurologists'.
I've had my share of 'non-MS' MS symptoms.  What I mean by that is
that my signs and symptoms do not fall into the classic description
of MS.  As an example, my chronic pain is now treated as an MS
symptom, but it took more than five years before the neurologists
would accept this.  I've also had tonic spasms.  These are like
having a charlie-horse in every skeletal muscle on the right side
of my body.  When this occurred, I was in a different city near one
of the biggest and best MS clinics in Canada.  I went in and I was
videotaped having one of these seizures.  The result was a definite
diagnosis of MS (finally after 12 years).  When I returned here and
told a neurologist about the diagnosis, he said "I beg to differ
with my colleagues in London, but you don't have MS."

All I'm getting at is that you will experience a lot of bizarre
symptoms with this disease, and that neurologists will make you
feel like you are going crazy.  Just take their comments for what
they are worth, nothing.  Neurology is the most archaic area in
medicine.  To the best of my knowledge, there aren't any cures for
any neurological disorder.  The neurologist may be able to provide
you with symptomatic relief, but that is about all.  Here it takes
an average of 6 weeks to get in to see a neurologist.  For me at
least, the symptoms usually subside before I get into see him or
her.

Ten years ago, I saw a psychiatrist who dealt with pain problems.
He gave me some words of wisdom for dealing with a chronic disorder
(which he was sure was MS).  He told me to find a GP who I could
talk to.  The GP should be able to prescribe the same treatments
that I would receive from a neurologist and I would get in a lot
quicker.  The GP should also be able to get me into a neurologist
quicker if necessary.

 From personal experience, I have a better outlook on life when I
don't have dealings with neurologists who have labelled me
hysterical, a hypochondriac, depressed, etc.

Just a few words of advise.  I don't know if you know that muscles
start to deteriorate after a few days of disuse.  To maintain your
muscles, you will have to find out how much activity is enough and
how much is too much.  You have to try to walk this fine line.  In
1979, I stopped working.  I was told by my pension board that I had
to stay at home.  Not knowing what was happening to my body, I did
just that.  Within 6 months, I couldn't even walk across the
street.  It took me 3 years to regain what I lost in those 6
months.  I hope you don't fall into the same trap.

Talk to you later.

    Gary

 # Origin: T.P.V. - Calgary, Alberta, Canada (8:7500/198)

--
Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!129!34!Gary.Bewell
Internet: Gary.Bewell@f34.n129.z1.fidonet.org