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From: Gary.Bewell@f424.n104.z1.fidonet.org (Gary Bewell)
Newsgroups: misc.handicap
Subject: MS
Message-ID: <18483@bunker.isc-br.com>
Date: 3 Apr 91 21:12:18 GMT
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On 17 Feb 91, you wrote to All

 PF> Can someone please explain MS to me?  What are the
 PF> beginning symptoms like and why do they find it so hard to
 PF> diagnose it initially?  Is it just that they dont want to
 PF> make the diagnosis or is it really that difficult to
 PF> determine?

Hi Patricia,

MS is a disease that attacks the central nervous system.  That's
the nerves of the spine and brain.  The protective covering on the
nerves hardens and breaks off.  This is something like what happens
with an old electrical cord.  You know how the plastic becomes
brittle and falls off.  After this sometimes the cord shorts out
while other times it's okay.  (MS is something like this, although
more often the hardened insulating material prevents electrical
impulses from getting through.)

There aren't any typical beginning symptoms.  The first symptom
that I recall as being a common MS symptom was going 98% blind in
one eye.  With prednisone I was able to reverse this to 98% vision
in the eye.  Other common symptoms are abnormal fatigue, numbness,
tingly-ness, weakness, tremor, spasticity, blurred vision, urinary
problems.

It's hard to diagnose for several reasons.  The doctors want to see
signs, not symptoms.  A sign being something that is observable.  I
can't remember how many signs they want to see, but it is something
like 4 or 5.  Most people with MS live with a rollercoaster-like
life of flare-ups.  I've found that if I'm experiencing a flare-up
and make an appointment to see a specialist, the 6-week wait for
the appointment is too long.  By that time I'm in a remission.  The
symptom has calmed down.  To short-circuit the long wait you have
to have a very serious flare-up or an 'exotic' symptom.  The main
categories of MS (I'm using main because I might have forgotten one
or two) are possible, probable and definite MS.

For me my eye specialist sent a letter to my family doctor saying
that I probably had MS in 1973.  The medical profession ignored
this.  It took from 1976 to 1981 to get a probable diagnosis.  I
visited 29 specialists and had over 250 appointments.  My definite
diagnosis came in 1985.  I haven't been able to work since 1979.
(The definite diagnosis hasn't been accepted here because the
neurologists here didn't see the 'rare' type of seizure that I had
in Ontario.  The seizure was videotaped.  I was examined before and
after the seizure.  After the seizure I showed more traditional
signs of MS.)  Politics enters into the diagnosis as does a
misguided idea that the patient can't handle being told they have
MS.  I suspect that if a study was done, the results would be that
most of us are relieved to finally have a label for our disease.

Beginning symptoms.  There isn't a foolproof set of symptoms. Most
of the time we write off symptoms.  I'm just having an off day.  I
remember having problems with my wrists back in 1967. They seemed
to tire very easily.  In 1970/1 I remember going through periods
where I could not get up I was so exhausted after doing nothing.
In 1974 I remember having foot drop when I was running.  The foot
started to flap after I started running. I began wearing boots to
provide ankle support.  I hope this gives you an idea of how
difficult it is to pin down early symptoms.

As an aside, nowadays more cases of MS are being diagnosed through
computerized 'x-rays' called MRI (magnetic resonance imaging).
These have a 90% reliability--not very good for nerves involved in
vision or in the brainstem.  There are also a lot of diagnoses of
MS being made after a person dies.  During autopsies doctors are
discovering people who didn't even know that they had MS.

I don't know if you have heard about the bell curve.  It's used
used in statistics.  Basically things like intelligence and also MS
follow the shape of a bell.  At the outside edges there are very
few people. The majority are towards the centre.  For MS on one
outer edges are those who have very little impairment and on the
other edge are those who are severely impaired and confined to a
hospital bed.  The majority of us fall between these extremes.

If you think you or someone you know has MS, you might want to pick
up "Multiple Sclerosis: A guide for patients and their families"
editted by Labe C. Scheinberg.  It is one of the best books on MS.
Steer clear of older books, they paint a depressingly grim picture
of life if you have MS.  There is life after a diagnosis of MS.
<grin>

     Gary

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