I'm considering finding a new doc to see about MG, but I don't know if it's worth the trouble. Especially not worth it if they just look at me funny and think I'm a nutcase.

One possible issue for me is, I have that ACTN3 sprinter gene thing... which I wrote about in another thread. It makes me really strong in small spurts, or something like that. So someone who was asking me to lift some weights, or whatever, they would think I was strong/normal and obviously had no muscle problems. I guess they could still test me and I could try not to push myself. Or I could push myself and tire myself out and then they could see the weakness. I'm unsure.

But I guess a lot of MG patients are accustomed to pushing themselves to get something done, and have that ability? Or maybe it's more because of Fibro but it makes sense to be MG. Most of the time, unless I exerted myself a lot in the previous hours or couple of days, I can just stress myself out mentally and get something done. It seems like it MUST be because I cause stress and release acetylcholine in my body, so then my muscles have more. And my muscles normally have very little. Or something like that, it feels very unhealthy to have to push myself this way. I think it's like how a normal person can get superhuman strength if they were in a crisis (had to lift a really heavy beam to free their friend), but I do it all the time to myself just so I can walk up the stairs or do anything.

Yeah, generally when I try a new supplement or medication I ditch it in a few days. But Mestinon was a clear keeper. I was trying to describe to others how it felt.

People who have dysfunction of their autonomic systems can be put on Mestinon and that's why I got on it. It only works for some of the people, they say it works only if your type of autonomic problem is due to autoimmune problems. So that makes the situation even stranger - do I have MG, just Fibro, or some other autoimmune thing, or what... I wish I would just test positive for something clear cut.

Anyway I was trying to explain to others how Mestinon helps and what it doesn't do... the main thing I think of saying is how the effect is so subtle yet powerful. Strange huh. Besides the initial weird feel I get.

Re: kicking in, yep... us sensitive people can feel so much more. And other people can see it kick in if they're around me too. Or if they stopped by for a visit, they could usually tell if I had taken it or not.

Wondergirl,
I can relate to your descriptions of being able to push yourself. I have always had this ability, almost exactly as you have described it, and even with MG I can do it for short times when I need to and I may seem strong, maybe even stronger than a "normal" person, but only for a short time. I try not to push myself because later I feel extra weak , but sometimes because of MG I have to and then be prepared for the crash later on.

Another side effect I have had from too much Mestinon, is double vision. When I first started taking Mestinon I took the entire pill, 60 mg and it would give me extreme double vision for about 1 hr...but I really didn't care because all my other symptoms were better. I did have double vision with MG, so I didn't realize at first that the Mestinon was making it worse. When I decreased my dosage, the double vision went away. Now that I am taking only 15 mg per dose, I have no double vision at all.

I am glad the Mestinon is helping you.

Yeah, later I feel extra weak too.

Oh, me too, I have a bit of double vision normally. The optometrists never knew what to tell me. The double vision is way worse on Mestinon. I think the normal double vision I get is due to me "stressing myself out" to produce more acetylcholine.

Even when I'm not consciously stressing myself out, my body is doing it to me. Because when I am not on Mestonin and I decide to walk up the stairs, then my body has to produce more or I couldn't get even halfway up.

I need to get a lot better about taking Mestinon at least 2 to 4 times a day. If I take it, I get things done, and feel good that I did... I can't believe it's so hard for me to actually take it considering that I am happier if I do.

have you been tested for mercury poisoning? if your mother has the same symptoms, it's a possibility, because mercury inhibits the use of ach in the muscles. it's something i'd explore, especially if you're seroneg. if that's the problem, chelating could get you off mg therapy entirely, but if i understand right, mercury could kill the ach receptors if not eliminated. it's something i ran across recently, so i'm not well-informed.

For me these are early days in my MG diagnosis and treatment, having just completed 4 days of IVIg last week and being on Predisone for 8 days so far and Mestinon 14 days so far (now at 45 mg's four times during day). But I think that I am seeing improvements with Mestinon. Better swallowing with less or no choking, more successful deep-breath attempts, more general energy, able to speak for longer periods without a shut-down (although I constantly have a weak, horse, voice that sounds like Marlin Brando in The Godfather). But again, with all these treatments and drugs in recent days its hard to tell what is doing it. I am getting some of the published side effects of the Mestinon, however, such as smaller eye pupil size (which is blurring my vision somewhat), frequent urination, a bit of a "wired' feeling...but all manageable. Best to all...Mark.

Oh. Frequent urination is a side effect of mestinon? That explains a lot.

I feel totally ripped off. I get the frequent urination for a side effect, and some of you are getting a "buzz" off of it. I would much rather get the buzz.