Sam- I want to tell you, i think were very close to the same on the MG level. I went to my opthamologist, saying i had a droopy eye, she then thought i had mg, sent me to a great neuro, - yet not a mg expert, who i know see at duke- and the blood tests came back negative, and yet my neuro still wanted another test to diagnose, and i had a SFMG, (single fiber muscle test) and it came back positive. I also was very active before all this happened, and to this day im still having a hard time not excersizing. But, let your doctor know that you are going to do that, and see what he says.

Also, im with Annie- You need someone who knows more about MG.

Are you feeling weakness in any other muscles throughout your body? I didnt have any other symptoms really until after my surgery, I had my thymus removed, and hopefully, it puts me into remission.

But just be careful and dont over do it, because when I did, PLURAL, i ended up in the hospital. 4 Times.

Just keep yourself at ease with it all, and make sure that you dont over do it.

That's how most definitions have it, Jana, but I actually prefer: Ah-set-ill-co-lean. It should be called "Unsetylcholine" or "Upsetylcholine" for how it unsettles our lives and upsets us!

Annie,

Thr Dr. gave me his number and if I have any problems I can call 24/7 and will get a return call from someone in the practice.

If I don't have any obvious symptoms why would I go onto Mestinon? Yes my left eye droops after staring up for a couple of minutes. But no droop is noticable in the eyelid right now, no double vision....

I've been pushing my body really hard lately.. Again I want to get ready for a half marathon. I don't think anything is out of sorts except what is normal for trying to get my body back into some sort of shape... rather than round.


"You might want to write down a bunch of questions for your neurologist. The first one being: If I have MG, why didn't you at least give me Mestinon?! Mestinon treats the symptoms of MG, not the autoimmune process. It can give you more of the "muscle gas" called Acetylcholine (ah-seat-ill-co-lean) that people with MG lack."

Sam

Hi, Sam. I'm glad you don't have any obvious symptoms now. But what if you rapidly get worse? If it were me, I would like to have at least one drug for the disease I've been diagnosed with on hand "just in case." Like after you run that half marathon. What if that is the trigger that kicks your MG into high gear? Your body gets heated up during exercise and heat makes MG much worse. Just be careful. Some MGers have gone into crisis, where they can't breathe well or speak, and they could not tell someone what was going on! At least carry a small "medic alert card" in your wallet/back pocket saying that you have MG and the name/number of your neurologist. What else is usually on a card like that is an emergency contact (like family), insurance information, drugs you are taking, past surgeries, other doctors, etc. Just write some stuff on a piece of paper. You can laminate it too, getting laminate from an office store, in case it gets wet and no one can read it!

I hope the marathon goes well.

Annie

Annie, Sam is like I was at first (way back in 2005) -- floating down the River "de Nile". Why did I need Mestinon? I just couldn't whistle. Whistling wasn't all that important anyway!! AND, I had asthma -- the drug info said that asthma and Mestinon sometimes don't "play well together". So, it took a week or so for me to get my nerve up to even try the darned stuff. But, when I did -- WOW! I had some fatigue that I had not even been aware of -- and the Mesty made it better.

I agree that just HAVING some Mestinon "in hand" would be good -- I'd rather HAVE it and NOT need it -- than NEED it and NOT have it! (My profound statement of the day -- before brain fog TOTALLY consumes me.)

Too funny, Jana. I needed to laugh, thanks. Not at your expense, however, Sam!!

I got asthma a month after I started Mestinon. I had "bronchial hypersensitivity" diagnosed a year earlier. And sometimes I cough right after I take my dose.

None of us want MG. And it rarely stays "benign." I don't know why, but with guys it can often flare rapidly. Like with Tyson. We just don't want you to crash and not be prepared, Sam. And most neuros will at least have their newly diagnosed MG patients "try" a small dose, like 15 - 30 mg. of Mestinon, to see if it makes any kind of difference. Sometimes with MG, you can get so weak so slowly that you can't even tell you are weak. Like how I was right before my MG crisis and got to stay in the hospital for a week . . .

Annie