Wow, Annie! Thanks for the thorough reply. All I know is my labs were drawn through Labcorp. Not sure where they send it though.
How would a neuro test for fatigable muscles? I can't remember them doing that? During my emg, they taped my fingers together and had me try to separate them as much as I could for a minute and then they did the test...I can't even remember now if it was the needle part or nerve part they did after that. I guess it was normal?
I think my neuro is looking for someone locally to do the single fiber EMG. He doesn't do them. I'm close to Kansas City so hopefully something will be available.
Is muscle burning ever a symptom? My neuro seems to think it's not, and I don't usually have it, but sometimes if my hands are above my head too long I get the tired feeling AND my shoulders will burn. He says he usually has people say their muscles just give out on them....like they quit working. I don't have that. I suppose I have a mild case of whatever I have.
Also because I don't have any swallowing/speaking issues or no/very minimal eye involvement, he doesn't really think it's MG. The only reason I'm posting on this board is that all the research I do, I keep landing back here simply based on the nature of my muscle feelings/symptoms. I feel like I don't really fit anything I've read about and I've done a LOT of reading!
Thanks to anyone for any insight you can provide!
Kelly

There is a lot of disinfo and even more misunderstandings about MG.

You know how athletes push their muscles to the limit, like runners do? Their muscles get weak at some point, cramp, spasm, and burn. The muscles of MGers just do that much more quickly.

Yes, muscles can "give out," but the spectrum of weakness is not that simplistic. Muscles can get so weak that they can be paralyzed. That's the extreme. And not all muscles are affected the same way at the same time.

Your writing/doing arm can be weaker than your other one. It all depends upon which of the 640 skeletal muscles are being used and how weak they get. There's no predictable algorithm for this disease, which can be a frustrating thing for left-brained people who need everything to be all neat and tidy (like doctors).

You might not have MG, but negative tests don't rule it out. As I said, ask them to send your blood to Mayo and redo the antibody tests.

There is no such thing as "mild" MG. That's mildly amusing. A MGer can go from having mild symptoms in the morning to severe at night. Or from day to day. It depends upon what drugs we're on, how much we do, how little we rest, the stability of the disease, etc. It can fluctuate greatly.

If an MGer gets overheated, for example, muscles can get rapidly weaker. (Heat increases acetylcholinesterase, which decreases acetylcholine.)

They taped your fingers together? Sort of a cheap version of the SFEMG, where you need to flex or raise muscles during the test. A person can have a negative RNS and a positive SFEMG.

Are you on any drugs? I'm asking because some drugs can make MG worse and some can interfere with test results.

See a neuro-ophthalmologist. A neuro is not qualified to do the testing that they do, which is very specific.

Getting diagnosed with MG is not as simple as 1-2-3. Give it some time!

Annie

Did they happen to check an aldolase level, vit D, vit B12?
Good luck!!

I'm not familiar with the aldolase test...I'll have to check. Probably not. I've had D checked in the past and although I've always run low, I do take 1,000-2,000 units daily of D3. I don't think we've done B-12 either. I am vegetarian, but not vegan. I do eat eggs and dairy. Thanks for the help.

aldolase can be abnormal in myopathies even when CK is normal, since you had myopathic changes with your EMG, albeit in different places at different times, plus proximal weakness, it's worth a inquiry!