[art chick]

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??

[Jaimee]

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?

[art chick]

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?

[Jaimee]

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.

[Stellatum]

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.

[Jaimee]

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?

[rezmommy]

Hi Jaimee,
I am seronegative but was diagnosed with MG on the basis of symptoms and single fibre EMG. I hope that your road to diagnosis is quick. My first symptoms appeared in Aug. 07 and I was diagnosed in Nov. 08.
Take care ~ Melanie

[Stellatum]

Jaimee,

My understanding is that it's a neurologist who would diagnose you with MG. However, there are some neurologists who specialist in MG. The one I'm going to specializes in "neuromuscular disorders." One way to find a neurologist who specializes in, or has experience with, MG is to write to the muscular dystrophy association. MG is not a kind of muscular dystrophy, but the muscular dystrophy association has MG as one of its covered diseases.

The website is mda.org. You can click on the "contact us" button at the bottom. I emailed them, and it took a couple weeks to get a reply because my email ended up in someone's spam folder. So it may be better to call.

I hope you can get some answers! My biggest nightmare--bigger than even being diagnosed with some horrible progressive disease like MS, or with a brain tumor--was having the doctors think I was making it up while I got steadily worse and worse...so as bad as MG is, at least it's a diagnosis.

Abby

[art chick]

omg. . .i didn't know the antibody test could come back negative and i could still have it. i really hope for a more definitive answer than that. this all started for me a long time ago.

in the winter of '06, i couldn't walk for 2 1/2 months and no one could figure out why. the stress was so bad i stopped sleeping for a month and had shaking also that has now returned that no one can understand (non-epileptic). i was given an anti-psychotic to sleep so i wouldn't become psychotic from lack of it and i was able to walk slowly thereafter. fastforward 3 years to attempting to get off the meds began the shaking again and leg weakness and now the meds won't work anymore. now they are finally interested in what is the actual cause of it all.

my right leg gives out intermittently, my balance is crap, i'm dizzy and nauseated a lot, and my left eye droops on and off. my arms get tired washing my hair, i pant after climbing the stairs sometimes for no reason, i get things caught in my throat sometimes. i have progressive bilateral hearing loss and tinnitus 24/7 and they think i have meniere's disease too now along with migraines. i mean this has been an absolute nightmare. but after reading about mg, i really think it fits in a very eery way. i don't know if other things are like that and i just want this to end????

[Jaimee]

Art Chick, I'm surprised you haven't heard results yet... Maybe they did what people here suggest and actually sent it out to Mayo or somebody who knows what they're doing. I'm sorry you're dealing with this. I understand!