[misc.handicap] M.S. flare-up

Gary.Bewell@f34.n129.z1.fidonet.org (Gary Bewell) (10/30/90)

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)

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Aaron.Feldman@f204.n260.z1.fidonet.org (Aaron Feldman) (11/02/90)

Index Number: 11449

Gary, I want to thank you whole heartedly for your reply it was very 
insightful and relevant. I was seeing my GP (who died) and now I feel 
like I am between the "devil and the dark blue sea" (something like 
that). The GP I see says he can't perscribe or tell me anything about MS 
and the neurolgist doesn't wish to be bothered with minor symptoms 
especially since I have no insurance and it takes me 4 months to pay his 
bill. There is a clinic that I am going to look into I also have decided 
that it might not be a bad idea to go back into counseling. I wish I 
could see a male this time though. There are issues of impotence and 
power that are important and that I think woman are more tolerant of and 
therefore tend to minimize them. Anyway so far I have had no symptom 
relief and you are certainly correct about muscles. (I wish you could 
tell me more becos I don't understand the physcial dynamics). However, 
since one leg is almost completely numb I have been using the other to 
ambulate and now am starting to have terrible muscle spasms and pains. I 
don't know , at least for myself at this point, how to determine the 
correct amount of movement. I keep pushin although it has been harder as 
of late for my equilibrium of *off*. I am so dizzy. Been taking antivert 
but that doens't do it. Of all these little nasty symptoms it is the one 
that bothers me the most. Dizziness can reander me helpless and that 
scare me. pls keep in touch, Aaron

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Adrienne.Barhydt@p15.f41.n105.z1.fidonet.org (Adrienne Barhydt) (11/05/90)

Index Number: 11520

In a message of <Oct 28 20:41>, Aaron Feldman (1:260/204) writes: 
 AF>therefore tend to minimize them. Anyway so far I have had no symptom 
 AF>relief and you are certainly correct about muscles. (I wish you could 
 AF>tell me more becos I don't understand the physcial dynamics). However, 
 AF>since one leg is almost completely numb I have been using the other to 
 AF>ambulate and now am starting to have terrible muscle spasms and pains. I 
 AF>don't know , at least for myself at this point, how to determine the 
 AF>correct amount of movement. I keep pushin although it has been harder as 
 AF>of late for my equilibrium of *off*. I am so dizzy. Been taking antivert 
 AF>but that doens't do it. Of all these little nasty symptoms it is the one 
 AF>that bothers me the most. Dizziness can reander me helpless and that 
 AF>scare me. pls keep in touch, Aaron

Aaron,
Stretching and range of motion exercises are very important but they must be 
GENTLE.  My stretching routine is my number one priority every day.  If I have 
only enough energy to brush my teeth or stretch, I choose stretching.  I 
believe it would help you a lot to see a physical therapist to work up a 
routine for you, so that you will stretch the muscles that you need to stretch 
in the way that is right for you.  I'm sure it is easy to do damage if you 
don't learn how to do it right.  I know - it costs bucks.  I wish it didn't.  
Doctors can't cure us but things like physical therapy can keep us functioning 
lots better.
If you can work out a way to see a PT, try to find one who has worked with 
people with MS before.  They must understand your energy limitations to be 
helpful.  Perhaps your local MS Society office would have some referrals or 
maybe someone else in your area that has MS would have some ideas.

As far as muscle spasms go, the stretching might help some.  I seem to also be 
seeing a pattern in myself where if I overdo things physically ( and it 
doesn't take much!) the spasms get worse.  I am trying to learn to rest before 
I get tired to avoid the spasms.  (I think of this as trying to learn an 
advanced technique; I need some work in that area yet!)

I hope this helps some.

Adrienne 

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