I read in this excellent overview:

http://www.uwo.ca/cns/resident/pocke...uscular/MG.pdf

...that if Mestinon is not effective for a patient, it might be because a certain kind of binding antibodies result in the destruction of the muscle endplate (see the end of page four and beginning of page five). The resulting loss of aceytylcholine receptors is describes as "more long-lasting" than, for example, when the receptors are just temporarily blocked by antibodies. How long-lasting is long-lasting?

What I would really like to know is this: if a patient had those sorts of antibodies, would his MG symptoms not fluctuate? Because mine sure do. I'm strong in the morning and I get weaker as the day goes on. I also have stronger days and weak days, and also less weak weeks and much weaker weeks. My muscle weakness also moves around--six months ago I was having trouble swallowing, and now I'm not, for example.

I'm trying to find an explanation for why Mestinon doesn't do me any good. Since I'm seronegative, the fact that Mestinon doesn't help (and that my eyes are still fine) is one more doubtful factor in my mind, especially as I near the end of the 10 months that's supposed to be the longest you have to wait for Imuran to start working.

Abby

Abby, You might also want to consider that Mestinon may be acting on some muscles - like the ones that aren't that bad - but not acting on the ones that are really bad. So it may not seem like it's working but, in reality, it is. And you can't take more because more isn't necessarily better and may overdose the muscles that are doing better.

What happens if you take a Mestinon "holiday" and then take it again? Have you been on it and then gone off of it?

I always give this example because everyone has had pain. If your back hurt a little bit and you had a raging headache, acetaminophen may make your back better but not your headache. Except that with Mestinon, more isn't better. Neither would acetaminophen for a migraine. So you have to switch it up and use a different treatment, like IVIG for MG or Imitrex for migraines.

I don't have an answer for you, other than that. And Mestinon doesn't work for everyone but that doesn't mean you don't have MG. Crazy confusing disease, eh?

Annie

Thanks, Annie. I have been on and off the Mestinon many times. I keep wanting to try it again, just in case I was missing a more subtle effect, and then convincing myself it's doing nothing, and giving it up. Lately I've been trying a very small dose.

It's almost impossible to tell if it's working subtly or not! I have so many unexplained ups and downs from hour to hour, from day to day, from week to week. Sometimes I take the Mestinon and have a good day or a good week and think it's working. Sometimes just the opposite happens. Sometimes I get really weak in the late afternoon, when the day's doses have piled up, and decide I'm over-dosing and it's making me weaker.

Thanks for responding. I just think that after a certain amount of time on Imuran--maybe 18 months--if I still see no effect at all, I should ask for some more tests (muscle enzymes, possibly a biopsy). I'm seronegative, Mestinon doesn't help, and my eyes are fine. If this isn't MG, maybe it will be easier to diagnose now that I've had the disease for almost three years.

Abby

Abby, If you really think that you have something other than MG, you should trust your instincts and talk to your neuro. But you know how some doctors don't like to be wrong and might dig their feet deeper.

It's unfortunate that the doctoral thought process often goes to that selfish, litigious place. As in, oops, I misdiagnosed my patient, what will happen to ME.

Now that you've been on immuno's, some of the tests may be negative. If you decide to pursue a biopsy, you would probably need to go back to that guy who did the last SFEMG or somewhere that has the capability of doing a GOOD muscle biopsy.

I know you've kept a journal of symptoms but have you taken a step back, reread it and come up with a summary of when things happened, what the main symptoms are, etc.? Maybe it's time to revisit that.

My symptoms are classic MG but there are those who don't have the classic profile and still do have MG. And there can be overlap issues, such as autonomic dysfunction. I wish there were an autoimmune clinic somewhere that specialized in all of this!

Doubt isn't fun to live with. I hope you can sort it all out soon.

Abby, I wanted to let you know that I am seropositive for binding and mestinon does NOT help me. I went on it, then went off it to clear up some GI issues, and went back on it. It never helped. I am now on neostigmine, which does help somewhat. So far IVIG helped my breathing problems more than anything, but neostigmine does seem to help take the edge off of them. We need to get more aggressive but I am trying to get in to get my thymic tissue removed before the end of Feb (not sure it'll happen) due to an upcoming change on my insurance, so I haven't pushed my neuro much yet.

Thanks. That helps to know. Meanwhile, I've been experimenting with the Mestinon (with my doctor's OK), and I'm starting to think it does help. Not (like Annie says) on really weak muscles, but on mild weakness. My problem may have been that I was taking way too much. Not only have I gone down to half a pill (30 mg.), but I'm taking it further apart. Before, I think what was happening was that by the late afternoon, which is typically a bad time of day for me anyway, the doses I'd been taking every three to four hours were sort of piled up, and that was making the weakness worse. Now I take my first dose at noon, and my second at 5:00. I really do feel better, only there are so many ups and downs to this disease that it's hard to be too confident that I know why I'm feeling better.

I hope you can get your neuro to get more aggressive. I am going to tell mine this: I spend all day doing nothing so that I don't get myself into a state where I can't do anything. Then, periodically, the absurdity of that hits me, and I overdo it, and then I'm on the floor. If this is the best we can do, I will learn to live like this. But if there's something more we can be doing, something that makes sense in terms of a risk-benefit analysis, let's do it!

Abby

I'm a new MG patient, having discovered I had the disease when my left eye wouldn't stay open. This occurred around Thanksgiving. Around five weeks ago I began taking mestinon 60 mg four times a day. After two weeks of no improvement my doctor upped the dosage to 90 mg. After another week of no improvement he upped it again to 120 mg four times a day. While it works a little better in the morning if I had a good night sleep, I'm still seeing no improvement and the glare of the sun has become more pronounced.

I'm a 65 year old male in excellent condition and the only symptom I have is the droppy left eye. It's becoming very distracting and it taking a great deal out of me just trying to keep my eye open.

My doctor said this will be the last upping of dosage and will send me to a neurologist if no improvement is seen. Any suggestions as the thought of pregisone doesn't appeal to me?

garyg8489

You need to see a neuro. Most GP's don't even know what MG is. I started MG at 69 and it has taken 2 1/2 years to get a witches brew of drugs to get my life back to near normal.
Mike

I agree. You need to go to a neurologist.