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mysterious illness
Tue, 02/12/2008 - 03:52Hi,
I'm hoping someone here can relate to my mysterious
condition. Am I the only person on the planet with this weird
disorder? I had a stroke-like event almost 2 years ago (severe
head/neck pain, numbness on right side of body, difficulty speaking and
walking, etc., etc.) I've had TONS of tests and seen various
specialists, but nobody can figure out what hit me. Viral
encephalopathy is a popular theory, but my white blood cell count
wasn't elevated when it started, so I don't buy it. Anyway, I've
had some serious issues since then; sensory, motor, and autonomic
neuropathies -- constant, severe burning pain, muscle twitches, gut
inactivity, etc. (all still present). My blood pressure and heart
rate plummeted at the onset. I was barely conscious for
months. For a few months, I would wake up several times each
night in sheer terror, gasping for air (I swear I was dying). I
felt like my neck was being constricted -- not my windpipe, but my
carotid arteries...or maybe jugular veins -- I could feel the pressure
(probably blood) drain from my head when I shot upright. Maybe it
was pooling because my blood pressure was so super-low. I woke up
with completely dead arms for months! They were cold and totally
numb -- like they belonged on a dead body. Lots of my symptoms
improved, but a bizarre, new one cropped up about 5 months ago (1.5
years after my acute episode): my abdominal muscles started contracting
with a violent jolt when I would witness someone having a seizure on
TV, for example. I had the same physical response when I saw an
old lady tottering along the sidewalk and imagined her falling off the
curb into traffic. Then it started happening when my husband
kissed me, etc. (nudge, nudge, wink, wink). And I'm talking
uncontrollable, jolting, teeth-crashing sit-ups! It has gotten a
lot worse over the past few months. These abdominal convulsions
(seizures?) happen A LOT! After working in the yard the other
day, the jolts lasted throughout the night. They kept my husband
and me awake until 4:30am. They started as individual bursts a
few minutes apart, but after a while, they were a constant contract,
relax, contract, relax situation that left my abs totally fatigued and
my neck feeling like I had whiplash. Does this sound like
epilesy to you experts? Doctors typically don't have first-hand
knowledge. From what I've read, it sounds like remote simple
partial seizures -- the all-nighter sounds like it progressed from
myoclonic to clonic. Does anyone know if anything can be done about
this condition? I'm exhausted...and the neuromuscular doctor I'm seeing
simply suggested magnesuim supplements (no improvement after 2 months)!
Surely, someone has a better idea? Thanks in advance for reading this
lengthy post, and hopefully replying.
Re: mysterious illness
Submitted by graphicsgoddess on Mon, 2008-02-18 - 03:26
Im no doctor,
but have you been tested for MS?
From what i remember working with hanicapped kids..... and reading.... it migh tbe worth looking into.
Im no doctor,
but have you been tested for MS?
From what i remember working with hanicapped kids..... and reading.... it migh tbe worth looking into.