Mestinon doesn't seem to do anything for me. For a while I thought it did, but now I believe that was just the normal ups and downs of my illness. I have tried many, many experiments to see if I could get a boost out of it, either to prevent mild background weakness or to stop more acute spells, and nope.

Is there any reason to think that a different drug in the same class would work if Mestinon doesn't? I'm going to ask the Boston neuro when I see him tomorrow, but I was wondering if anyone here had a suggestion.

Abby

Can't wait to see replys. I have the same problem.
Mike

Ditto!! Same problem here!!

I actually used to email with a doctor I met through an "ask the doctor" forum. He found my case "fascinating" just because I presented so strangely (MuSK testing wasn't up and running yet.) Anyway, I asked him that question, because, as luck would have it, I am allergic to mestinon as well as being one who didn't really find it effective (for the short time I used it.) He indicated to me that there really was nothing else available as far as prescription meds go, but suggested that I could try a dietary supplement called Huperzine A, which is used with people with Alzheimer's disease and had been studied some for use with MG.

I did try it, but didn't find much relief for myself, but then again, it was fairly expensive and my disease process became so accelerated and severe that I moved on to pred and other stuff and kind of forgot all about the Huperzine A. It might be worth a shot if there's nothing else around to help.

If anyone tries it, please report back to us!

If I may ask, what was so strange in your presentation. Do you have MuSK?

I have an unusual variant of MuSK (which means a rare variant of a rare type of a rare disease).

My neurologist suggested trying mytelase which has been shown by some to be better tolerated in MuSK MG. (from all the neurologists/MG experts involved in my care he was the only one who bothered to read this one paragraph in one paper).

I take a very low dose (5 mg. three times a day) and it did lead to some mild but constant and predictable improvement (unlike mestinon which made my illness less stable than it already was and injections of neostigmine which would lead to a very dramatic and very short improvement).

The first sign I have for an exacerbation is that I start having muscle fasiculations after I take the mytelase. So, I have learned not to take it when I am doing worse.

I've had the same experience. I wanted it to work; it seemed like it did for everyone else. But I have up months ago. It didn't make any difference. Glad there are others that feel the same

Yes, Alice, I have MuSK but at the time, I didn't know it. I presented very strangely at first. If you blinked, you might miss the symptoms. Not quite, but I would have very severe diplopia and dysphagia and ptosis yet by the time my appt would come, I would be symptom free. My antibody tests were negative for ACHR. I could wake up very symptomatic, yet improve as the day progressed. My legs were (and never have been) not really functionally affected.

I was, in fact, diagnosed with MG based on symptoms alone with some "barely suggestive" results on the NCV and regular EMG. That day my symptoms were present in all their glory. I was offered the SFEMG but the doctor said it didn't matter to him what that showed as he would treat me for MG, so I declined. I knew I had MG, too!

A few years later I tested for MuSK and it too was "borderline" but I was on Cellcept and pred at test time, so we chalked it up to that. With that test, the MG that I was experiencing had a name.

Hope that helps.

I just saw a neurologist who specializes in myasthenia gravis. I told him Mestinon doesn't do anything for me, and he said, "Yes, that's common with MG patients."

Abby