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Old 04-20-2010, 06:21 PM #1
art chick art chick is offline
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Default Do I have it?

I am waiting for the antibody bloodwork to come back (it's been a week already) and I am very nervous after reading that great article posted on here about MG. All that stuff about fatigability fits me to a tee: I cannot hold my arms up or my legs, my eye droops, and the voice goes hoarse before counting to 50. Are these SURE signs or could it be something else? I also have intermittent swallowing issues but my main issue is leg weakness without pain that is VERY severe and will not resolve in 4 months. I have had an MRI and an EMG (not single fiber) and both were normal. . .

At this point, they are ready to do an MRI spine if the bloodwork is negative or call it hemiplegic migraine with prolonged aura if the MRI is clear.

any thoughts??
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Old 04-20-2010, 06:59 PM #2
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Hi Art Chick! I have been diagnosed with hemiplegic migraine. I never understood how aura could last that long though. And the migraine meds never helped, instead made my symptoms worse... Do you get head pain?
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Old 04-20-2010, 07:38 PM #3
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Hi Jaimee. . .I do get migraines and I am on Topamax currently and still get a couple a month but not too much head pain--more on the nausea, light and sound and motion sensitivity end of things. I just cannot understand how it could just go on when the full blown migraine is over for weeks. . .

and all the other stuff is not migraine, right? so. . .do you have hemiplegic migraine and mg as well?
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Old 04-20-2010, 08:59 PM #4
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I have not been diagnosed with MG. I am in the process of trying to get all this sorted out. Have been dealing with it for 3 years now. My neuro tested the acetylcholine binding antibodies and they were negative. But from what I have read here, it's still not ruled out. But that's what I always wondered about the migraine thing too... How in the world could it just go on and on and on without letting up? Seems like a stretch to me.
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Old 04-21-2010, 10:18 AM #5
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Jaimee and Art Chick,

I am not officially diagnosed. My antibodies are negative, both the AChR and MuSK. My EMG was normal. My single-fiber EMG was "borderline."

Nevertheless, my neurologist thinks I have myasthenia gravis, just because of my symptoms. My symptoms aren't even that classic! My most troubling symptom right now is lack of balance that I think is caused by weak hip muscles--I tilt back and forth from the waist when I walk. I also have weak neck muscles and weak arm muscles. These symptoms mostly improve on Mesitnon. I had double vision once, before I started taking the Mestinon.

Anyway, I'm telling you my story just to show that different neurologists handle these things very differently. My neurologist is sending me to a mg specialist, but he's so sure I have mg that he's willing to start me on Prednisone before I even see the other specialist.

If your bloodwork comes back negative, but you're convinced that whatever diagnosis you eventually get is wrong, don't be reluctant to ask for a second opinion. My neurologist knows that some mg patients have negative blood tests.
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Old 04-21-2010, 10:43 AM #6
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That is very interesting... So is it normally a Neurologist which would do the diagnosing for MG, or would a Dr in another field be more likely to look at it as a possiblity in the absence of typical testing?
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