Hello Moshe!
I am sero-neg, recently diagnosed with generalized MG through responsiveness to
Mestanon, extreme fatigue, droopy eyelid, double vision w/aggravated
astigmatism, eyelash retraction, MG grimace, and the icepack test. Nerve
induction was inconclusive.
I am 37 years old. MG runs in my family, but usually only occular form starting
when one is in late 60's or older.
I have always had rapid fatigue, since I was a child, but was never diagnosed
with anything to account for it. I do have a heart murmur, but the cardiologists
have always insisted that I was complaining of more fatigue than the heart
situation could account for. Therefore, throughout my childhood and early
adulthood, I was repeatedly informed that I was being lazy, a hypochondriac,
etc.
I started suspecting something regarding the possibility of MG, a couple of
years ago (increasing fatigue, increasing vision problems). My doctor was
puzzled, because I was showing an increasing benign goiter but also having
normal blood levels for
thyroid. Diabetes tests were also negative, even though I have symptoms (rapid
fatigue and need to sleep after eating a large meal, dizziness and nausea if I
go longer than 3 hours between food, obesity, etc.). Because MG ran in my
family, I suggested it, but was told absolutely not by doctors and optometrists
(including a month before my crash, when I went in ... again... to update my
eyeglasses because they weren't working right). The optometrist suggested that
as I was getting older, the gel in my eyes was thickening.
Last October, I awoke one morning unable to open my right eye. I was dizzy, and
totally fatigued even though I had just woken up. Within a week, I was in to see
a neurologist, who ran antibody blood tests and an MRI (which was clear). With
an immediate and positive
response to Mestanon, combined with family history, he gave me an "empirical"
diagnosis of MG. He was very puzzled about the antibody-negative response. He
sent me to a neuro-muscular specialist at a teaching hospital, whom I saw in
April. We decided to do a trial of Cellcept, even though I am sero-neg.
To my infinite surprise, Cellcept is working wonders. I didn't expect to show
any response, or if a response would show that it wouldn't be for several weeks.
However, I started to show slight but clear and visible improvements within the
first week! My worst days now are better than the best days before I started
taking it.
I've done a CT scan for thymus, but haven't gotten the results back yet.
The Cellcept response tells me that I have antibody issues that AChR and MuSK
testing doesn't pick up on.
I also suspect that, whatever I've got... it looks a lot like MG, fits under the
MG umbrella for categorization purposes, probably, but I think it also involves
receptor sites in the Endrocrine system. My benign goiter has been shrinking
over the last couple of weeks, and I'm starting to lose weight.
Hope this helps with your research!
Michelle
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Wednesday, August 09, 2006