Print

Print


Camilla & Natalie,& everyone who wants to listen -
Thanks for replying.  I hope you will have patience with me as I try to
explain my reasons for thinking this.  At first glance it sounds utterly
absurd and you will be able to imagine the typical response I get to it
and probably yours  will be similar, but please hear me out before you
make your final judgment, and I am not particularly worried about being
wrong, I'd get over that, but I was making NO headway against this
horrible condition before this, and now I have made considerable
progress
in my opinion.  What is on the list of causes so far?  Correct me if I'm
wrong but I believe there are several known causes of Parkinsonian-like
symptoms including: carbon monoxide, carbon bisulfide,
arteriosclerosis,,
maybe magnesium or other heavy metals, reserpine, MTPT, the viral
encephalitis of a few decades back,etc. most (or all?) of which do not
respond to Sinemet.  Don't sneeze on it yet, but my suspicion is
airborne
allergens. (You may snicker, it's okay), but while you're recovering
listen a little longer & it may not sound QUITE so foolish.

I'll repeat some of what I said on the Harvard Webforum so you don't
have
to look it up:  I got my dx in 1992, and (Camilla) maybe it would be
more correct to say it was upgraded, (or downgraded) to MSA in ~1995
because I was showing quite a bit of evidence of autonomic nervous
system involvement (slow eye focus, bowel & bladder incontinence at
times, digestive, breathing, heart & circulatory problems),it was
horrible.  So in March of 1996 I got some more news:  I was PREGNANT!
I told them they had the wrong number and hung up, but they kept calling
back.  Now you know why I was wondering about the IQ thing.  It was
unreal, to say the least, but she, Mia Alexandra, Dec 5, 1997, 6 lb 10
oz is absolutely adorable and seems to be perfectly healthy, a born
comedienne, the only unusual thing I have noticed is that instead of
cooing & babbling she kind of, well, growls, is the best way I can
describe it, it is HILARIOUS, my other two, B&G 14 & 11, think she is
IT,
and she reciprocates the feeling to them.

Anyway, I will go back to PD.  After I found out I was expecting a child
I was concerned about the medications effects on the baby (Sinemet &
Eldepryl) so I, with my neurologist's agreeing, decided to see if I
could stay off the medications for the first trimester because that was
the critical time of development.  I made it for eight weeks at which
point I ended up in the ER with a threatened miscarriage and in BAD
shape.  I went back on Sinemet, but as little as I could, again  because
of the baby. During that 8 week period on NO meds I found,after much
trial, (I have LOTS of pain with my PD) anyway I found that if I
massaged
my neck muscles  A VERY LONG TIME, with a heat massager that ALL my
symptoms would GO AWAY, JUST BRIEFLY.  My neurolgist, and I believe he
is
very knowledgable, didn't have any explanation at all. This of course
suggested to me that, Hey, maybe all my dopamine producing cells are
not dead or dying, maybe there's another glitch of another sort.  I was
on my own to try & find out what I could.
During the remainder of my pregnancy while on very minimal medication I
began to notice distinct fluctuations in my symptoms.  On two occasions
we went on trips, (I wasn't really able to go, but went anyway rather
than stay home alone) I improved dramatically even on one occasion my
symptoms did a complete reverse, (it was time for my meds & normally I
would be pretty bad, but instead they all went away) for a while. Both
times when I got back home I was WORSE.  My husband & I began  to think
that it was something at home that was responsible for the difference.
To not be too long I'll just say we began to narrow it down till
allergens began to look increasingly quilty.  (I had always had VERY
severe sensitivities to many things, animal dander , concrete - I knew
if I swept a concrete  floor I'd be up 1-2 nights in a chair trying to
get my breath,etc.  But the amazing thing was now I didn't exhibit
hardly
any of my usual symptoms to those things, & many more so I went to be
tested.  The tests showed I was DRASTICALLY allergic to some things (cat
dander in particular) but also many others.  One allergist estimated
that
I was more allergic than 80% of his patients.  But could allergies
conceivably cause the drastic symptoms I experienced?  I knew that with
an anaphylactic type reaction, your whole body reacts on exposure to
certain allergens, but the real check with me was the reality check, I
knew that on certain occasions where I was exposed to my known allergens
I got a lot worse and when I was in the best of circumstances
allergywise
my symptoms would GO AWAY.  For instance I was evaluated at UVA by Dr.
Thomas Platts-Mills.  A young doctor took my history & after ~30
minutes,
I got BAD.  The DR. had cats at home I learned later.  Then he let me
sit in the "patient sensitive area"  After ~l0 minutes I was COMPLETELY
NORMAL.  There are many more instances.  I'll tell more later.