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mysterious illness

Tue, 02/12/2008 - 03:52

Hi,

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.

Comments

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.

Re: mysterious illness

Submitted by heather-who on Wed, 2008-02-20 - 21:48
Thank you for responding. MS was one of the first things I was tested for. My CSF was negative for it.

Re: mysterious illness

Submitted by heather-who on Fri, 2009-02-06 - 13:59
It has been a year since I posted this plea for help. It has taken 15 doctors (mostly specialists) and 3 years to determine that I have a Mitochondrial Disorder. I need a muscle biopsy to determine which one, but it looks like MELAS, MERRF, or MNGIE. The associated Encephalopathy that caused the stroke-like event seems to have caused Reflex Epilepsy/Startle Epilepsy.

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