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Date Posted: 20:58:08 07/26/00 Wed
Author: Sarah
Subject: Sarah's Letter of introduction
In reply to: Limboland 's message, "Letters of introduction" on 17:01:48 05/26/00 Fri

Hi, everyone. Thanks for sharing all of your stories. Oddly enough, it's a relief to be here. (Well, in some ways.)

I'm 39, one of the older ones in Limboland, which I guess makes me fortunate, and I live in the Seattle area with my partner of nine years.

Here's my story (I'll make it as brief as possible):

Sixteen years ago, My entire left side became paralyzed, I went completely blind, I couldn't speak at all, and I repeatedly lost consciousness. Within
a short period of time, I developed a knockout headache. Friends took me to the ER and then to a hospital in a larger city. Doctors put me out with
something, I vomited, and that was that. Follow-up tests at the Mayo Clinic showed nothing, and I was told I have "weird migraines" and sent on my
merry way.

Several times over the years since then, I've experienced partial paralysis. partial aphasia, and partial vision loss. For example, one time I was
driving, and my hand fell off the steering wheel, which was kind of interesting, especially since I didn't feel it fall off. I've only rarely (four or five
times) had migraine headaches inc conjunction with these symptoms. Also over the years I've experienced episodes of brain fog, difficulty identifying
and saying the words I want to say, weird sensations in my skin akin to burning feelings, ravaging itchiness, fatigue, especially in heat, a
hypersensitivity in my body that makes me want to rip my skin off, and jerking in my legs, especially in bed or, at least, in the evening or at night. All
of these symptoms have come and gone over the years, and I've gone through extended periods where I've felt great and been highly energetic. I
never saw a doctor about these symptoms because I just thought they were part of my "weird migraines." I've also experienced frequent constipation
and bloating. I didn't bother doing anything about that either because I felt like I could control it pretty well with diet.

Recently, over the last year and a half to two years, the symptoms have been increasing in frequency and the episodes in duration. Now if I have a
good day or even a good afternoon, I'm thrilled. In the last two months the fatigue has gotten pretty bad, my neck and shoulders are almost always
spastic (is that banding?), and I have short-term memory problems and lots of brain fog, almost constant tremors in my hands, althought the severity
varies, some hearing problems, and the same weird stuff I've had all along. A few weeks ago my feet and hands were numb for a few days and the
numbness started progressing up my legs.

I saw an untalented neuro two months ago who ordered an MRI for just my brain and without dye. (She assured me I could not have MS if nothing
showed up in a brain scan and that I didn't need a scan of my spine. Okay!) It showed nothing. Since then I've been waiting for her to order blood
tests to rule out I don't know what (B12, pernicious anemia, hypothyroidism?). I guess ordering those blood tests can be very complicated--you
have to check multiple boxes. (I am being sarcastic by the way--I know sarcasm doesn't travel well online, and I know it's not an attractive quality,
but it makes me happy sometimes.) I have an appointment with a highly recommended GP next week and I'm hoping she'll give me a referral to
someone whose name I got from CLAMS. In the meantime, I'm seeing a chiropractor regularly for the spasticity.

Did I say I would be brief? Sorry. I guessthe symptoms are piling up and taking more and more space.

One last obvious thought: I think empowering forums like this are, do I want to ssay radical?, yes, I do, because they keep us from being isolated in
our own strange symptoms, fear, and self-doubts. This is the kind of effort that, I hope, will gradually have a positive impact on health care and
nudge doctors in the direction of a partnership approach with their patients. I'm grateful to all of you for your brave participation.

Sarah (yapyap)

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Replies:

  • Ginlyn's Letter of introduction -- Ginlyn, 13:12:03 07/27/00 Thu
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