Hi!

The first time I had double vision (2006) I was in seeing a specialist opthalmic neurologist the very next day in NYC. She sent me home with an appointment for an MRI, an appointment for some blood work, an eye patch and a prescription for Mestinon (with instructions to "build up" from 1/4 pill, to 1/2, 3/4 etc.). I started taking it the next day.

The MRI was clear, ptosis was aded to my list of symptoms, the diplopia was highly variable (horizontal one day, vertical the next) and Mestinon worked great.

However, the bloods showed nothing and formal confirmation of diagnosis was years away, through a SFEMG.

Her diagnosis was therefore based on all the other factors combined, the absence of alternative explanations for my symptoms, her own experience and yes, in part, because Mestinon helped. I also got a second opinion and that neurologist confirmed diagnosis for similar reasons... ("It seems to me highly likely that MG is an accurate diagnosis" were his actual words...)

I'd suggest you should speak to your doctor and ask if he/she will prescribe Mestinon for you rather than wait. Your doc may have a reason to have not prescribed it yet, or he may have just not thought of it.

Good luck!

If you're having an EMG, you should go off the Mestinon anyway, so it would probably be best to try to stick it out until after the EMG. Also, no caffeine in any form including chocolate. There is an article in the links section pertaining to preparing for EMG. It has things the docs don't always tell you.

When I was in the hospital unable to swallow anything except my saliva, the attending Neuro, an MD, PhD, suspected MG based on my symptoms and decided to test me with a dose of Mestinon. Worked like magic, within 45 min. At that point she (Neuro) was fairly well convinced I had MG, but wanted to wait for blood tests to be completed before making the definitive diagnosis. Mestinon is also therapeutic for LEMS, and I suspect she wanted to rule LEMS out. Blood tests revealed a positive for AchR antibodies. MG was the diagnosis. ...Suppose ALL of your tests come back negative( like those of some others here), including blood tests, EMGs, SFEMGs, and the lot of them, but Mestinon works for you... What then will your Drs. say?? That you are not sick?? Depressed, as I was told... The proof is in the pudding... Mestinon remedies acetylcholine problems at the neuromuscular junction... That it works is proof positive that you have such an acetylcholine problem. What more??

Yes, ask him to try it.

Ideally you should try it while at the clinic--take a dose of about 60 mg and wait 30-60 minutes and see what happens while under medical supervision or nearby in the waiting room.

Often the doctor will initially prescribe too small of doses to be of value as a starting point worrying about the side effects if you get it to take at home on your own.

The side effects are pretty rough digestive distress unless taken with food and something like loperimide--especially at first.
Good Luck

I agree with limpnoodle that your physician is probably waiting until after the EMG since you would need to go off of it before the test. Certainly after the test, I would ask that he/she prescribe it and see if you respond. I am double sereonegative, but Mestinon works for me. My physician has me on a low dose, and I suspect I would see greater results at a higher dose, but I clearly respond to it, so that reaction coupled with having nearly all the symptoms listed for MG led to my diagnosis. Let us know the results of the EMG.

Hi
Your EMG is scheduled for 3 weeks time.
While you might need to be off meds prior to the EMG, I don't think it will be for three weeks!
Definitely ask your neuro about mestinon.

Could someone guide me to the links section? I am new here and am not seeing it. Maybe it's my iPad? I would like to read the article mentioned in this discussion about EMG testing and what to avoid.

I was given Mestinon before my single-fiber EMG diagnosed my Myasthenia Gravis. However, they did not give me prednisone until after the EMG confirmed the diagnosis. The Mestinon did help. Are you going to get a CT scan to check your thymus?