[Grovenet] Re:about MS

Tue Jun 6 14:32:52 PDT 2006

Joy, thank you for such an excellent overview of this challenging disease.
And I truly sympathize with your symptoms. I was diagnosed in 1988 at the
median age of 35. I fit the fair-skin female profile but grew up in the warm
climate of Southern California. More information than ever is coming out
about potential risk factors for developing MS. BTW no one in my family as
far back as anyone can remember ever had a neurological disease except
possibly TMJ.

The research team at the Harvard School of Public Health (and corroborated
by scientists worldwide) has recently found that people who had
mononucleosis as teenagers or young adults were about twice as likely to
develop MS later compared to people who had never had mono. At the age of
15, you guessed it- I had mono. That is the most specific research I've seen
to date about the viral component believed to play a part in triggering MS.
The same group also found that current and past smokers were 30% more likely
to be diagnosed with MS than those who had never smoked. Another reason to
quit and more importantly to never smoke as I did when I was young and very
stupid. My mom smoked when she was pregnant with me and I suspect that may
have increased my predisposition to the disease.

My symptoms began as weakness in my legs and fatigue. Working at a fairly
high powered job in the microelectronics industry requiring significant
travel, I didn't have much time to deal with the symptoms and assumed they
were due to the job and a difficult marriage. I responded by improving my
diet, increasing my exercise program and choosing to remain in denial
(always helpful, right?!!!). That lasted for about a year before the
symptoms worsened with difficulty standing for long periods without pain.

Then I found myself getting into a shower and the water that had tested warm
in my hand felt very cold on my legs. Then I knew I could ignore the
symptoms no longer. I was luckier than most in that after only 3 weeks of
(mostly painful) testing (long nerve tests, spinal tap and MRI) I had clear
indicators of MS. I was actually relieved in that my diagnosis ruled out
Lupus, Aids and brain tumor.... Shortly after the diagnosis I had a very
severe attack which left me bedridden for 2 months. I remember being so
weak, the fatigue so crushing, and my brain so mushy that it took two hours
to think through every movement necessary ahead of time in order to take a
shower without getting too tired, in danger of falling. No fun.

This tale is getting too long, but after divorce (very common when the wife
has MS-many men cannot cope) while in a wheelchair following another attack,
I began to fight back and have done amazingly well. I have benefited greatly
from exercise, nutritional, acupuncture and other so-called alternative
therapies utilized along with current established medical therapies. Much
research is being done now and much progress is being made to slow the
symptoms.

After beating the wheelchair, I remarried in 1994 and moved to Forest Grove
from So. Cal. and am doing better than I thought possible. So much so, that
we adopted and infant in 2002 and are thoroughly enjoying being
late-blooming parents. Challenging, for sure, but possible. Moving up here
was one of the best things I could have done. Smoggy, hot, crowded So. Cal.
was definitely not healthy for me. I had one setback last year when I
foolishly went out on an unusually hot day (97) in May for several hours and
that set me back a bit, but not too serious. Thought I was doing so well I'd
risk it....

Sorry to go on so long, but I wanted you to know that I have found that
transplanting here has been very uplifting and healthful for me. I hope we
get to meet at some point down the road.

Take care,

Leslie

-----Original Message-----
From: grovenet-bounces at rdrop.com [mailto:grovenet-bounces at rdrop.com]On
Behalf Of JBlair2154 at aol.com
Sent: Monday, June 05, 2006 10:49 PM
To: grovenet at rdrop.com
Subject: [Grovenet] Re:about MS

In a message dated 6/5/2006 2:08:22 PM Central Daylight Time,
grovenet-request at rdrop.com writes:

would  you say
more about MS? How is it contracted, what are the
consequences,  how has it changed your life...
that sort of thing, if you are  inclined.

Thanks for your interest, Eric.  Multiple sclerosis is a  chronic,
progressive, incurable disease of the central nervous system. It is
characterized as
"demylineating," because it causes the T cells in our  own immune systems to
attack the myelin sheath that covers the  nerves in the brain and spinal
cord.
(Visualize those nerves as  electrical cords with parts of the protective
outer
coating damaged or  destroyed, creating short-circuits in the wiring
system.)
It's a rather  unpredictable disease with symptoms that vary widely among
different individuals  and even among each person on a day-to-day, even hour
to-hour basis. Its course  can vary widely, too, from a sudden, severe onset
of
symptoms that can even be  fatal to the much more common course of rather
mild
relapsing-remitting attacks  with lingering effects which gradually become
worse. Its cause is unknown,  although several genes have been identified
which
are associated with it, and  sometimes it runs rather noticeably in
families. So
there is definitely a  genetic predisposition. Viral infections are also
suspected as playing a role in  its development...something that manages to
break
through the blood-brain  barrier and evoke an overzealous immune system
response. Fair-skinned  females are most often affected, but males seem to
have more
severe  forms, and it usually first rears its ugly head during young
adulthood.

In my case, the first symptoms which sent me to a doctor occurred  while we
lived on Crete and I was in my mid-30s. Unexplainable weakness, strange
feelings in one leg, occasional tunnel vision. Typically vague. The doctor
at  our
little clinic on base sent me to the Army hospital in Wiesbaden as an
out-patient for a complete neurological workup. No cause could be
determined. I  had
intermittent, mild attacks over the next few years (more vague and various
symptoms) until I was finally diagnosed at age 47 -- not long after CT and
MRI
scans came on the scene -- following a series of tests precipitated by a
sudden,  brief episode of monocular blindness. (At that time, the
immunomodulating
drugs to treat MS had not yet been developed, and I have chosen never to
take
any since then.) I reacted by signing up for clogging lessons and buying my
Acura. (This is called "Thumbing Your Nose at the MonSter." LOL) I continued
to  work full-time, long hours for another 7 years.
What most people don't realize about MS is that its single most  disabling
symptom is fatigue. A friend of mine describes this as waking up with  a
quarter-tank of fuel and trying to drive your body and mind through the day
on
empty. This is one of those "invisible disabilities" that healthy folks just
can't
understand. And the fatigue, which comes upon you so quickly, causes other
symptoms to act up: blurred vision, foggy thinking, drowsiness, clumsiness,
numbness, "foot drop," etc. I finally resorted to occasional wheelchair use,
just in the past 3 years, but I walk around the house most of the time and
for
as long, in public, as I can. Aside from fatigue and drowsiness, my most
troublesome symptom is loss of equillibrium. I must be VERY careful about
looking
up, down, moving my head suddenly, avoid closing my eyes while
standing...always fighting to maintain my balance. There are other symptoms,
too, but this
message is already too long so I'll shut up for now. Remind me to  tell
ya'll, sometimes, about what MSers call "The Wal-Mart Syndrome."   (evil
grin) Feel
free to ask questions.

Joy

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