I'm happy with my neurologist, whom I saw today. Even with a negative antibodies test and a borderline SFEMG he told me my diagnosis is 80% established. He ordered the MuSK test, but told me that even if that's negative, it doesn't mean I don't have MG.

He also told me that since I also have Graves' Disease, we should consider Prednisone or CellCept in the hopes of putting me into remission--I guess having two auto-immune diseases makes me a good candidate. But if we can get my symptoms under control with the Mestinon alone, I doubt he'll be able to talk me into taking those drugs!!!

Anyway, he told me to take 4 60-mg pills per day instead of three, and said I can experiment with how they're spaced out.

That's wonderful news! I'm so happy you can feel better.

Love Lizzie

I agree with you. As long as Mestinon keeps my symptoms at a level I can live with, I don't want to risk all those awful side effects from stronger drugs even with a chance of remission.

I am so thankful I am responding to the Mestinon, even though I still have lots of MG symptoms. At least I can walk, eat, brush my teeth, see, and do many other regular things with the help of Mestinon.

I do miss doing all the things I did before MG, but I won't take Prednisone or CellCept to try to get back to the person I was before MG. To tell you the truth, I don't like taking drugs at all and my doctor had to convince me to take the Mestinon.

I hope you are feeling better.

it's another one of those questions that was not properly reserached regarding MG.

what percent of patients will have progression of their illness if they do not recieve immunosupressive treatment?

I fully agree with you that it is not reasonable to take medications with significant side effects, just so that you could get back to your pre-MG state (and no one promises that even with that you will have full recovery).

but, what if you knew that half of the patients that don't get treated will have severe progression of their disease within a few years? obviously, you would think differently.

on the other hand if you knew that it was extremely rare for that to happen, you may still prefer to take that chance then deal with the short and long term side effects of immunosupressive treatment.

Osserman (at the time there was no immunosupressive treatment) described a sub-group of patients that develop severe MG years after they had very mild symptoms. but, he does not give their relative number in the MG population.

also to the best of my knowledge there is no research that was done, finding prognostic factor that can indicate who will and who will not progress without treatment.

it seems though that patients that have been ill for many years, respond less well to treatment then those that are newly diagnosed. and that patients with occular MG who were given steroids (even at a relatively low dose) have less progression to generalized that those that did not. but, even this is based on very limited data, from small patient groups, that were studied in retrospect.

I think that there is no real risk/benefit assesment of MG treatment, and each neurologist or patient decide regarding it, based on very little data, and mostly their gut feeling, which may be right or wrong.

I'm happy for you that your appt. went well. I hope taking the 3 60mg closer together and adding a 4th will help you even more.

Pat

Whoa. Too much Mestinon, I think. I took pills at 7, 11, and 2 (I was planning to take another at 5, hoping that the closer-together doses would cover the bad time of my day), and I crashed with exhaustion at 2:30. At 4:30 I tried to walk across the room and ended up on the floor. This is after a week with no trouble walking at all.

So, unless that was just a coincidence, then I think I learned some important information today! And now I'm wondering if my original dose--60 mg. three times a day--was too big. Unfortunately, my neuro's out of town for two weeks. I'm not sure he would be able to advise me, anyway--he never warned me that too much Mestinon is counterproductive (I learned that here).

Yep - it does sound like it could have been too much Mestinon.

I've always been sensitive to meds, so I'd rather be weak from too little than from too much Mestinon!! As a consequence, my neuro (and me too sometimes), think I under-medicate.

Then hot weather (more Mesty), increased activity (more Mesty) - - or increased activity in hot weather (much more Mesty...???) - - - - are still puzzles at times.


You and your neuro will figure it out -- it just takes some time and patience. Unfortunately, it just isn't an exact science from day to day.

Sue