[joyitl]

I agree with someone who said maybe all the MG patients living "normal lives" don't get on these threads. I like to think that is the case also, so that we can all have hope. I was diagnosed 5 years ago. Mine started from the "feet up" with no eye involvement to date, pTL.
I see 2 neuros because one doesn't talk much. He started me on ivig from the beginning and it wasn't enough alone so after several months I added Mestinon. I went from every 2 weeks to every 8 weeks with ivig. I know I am very fortunate to have what seems to be a rare treatment for MG. We have good insurance. Not sure what will happen after age 65 but I will let the Lord take care of that. I was taking 60 mg am, 30mg 4 hours later, and then 2 doses of 30 mg 3 hours apart until about 8:30 with no dosing overnight. The ivig makes all the difference in my quality of life. I wish this could be available to all MG patients.
After a URI last month and 2 days of high dose PRednisone, I have been in a "flare". I have increased my Mestinon to 30 mg every 3 hours. I've never understood if one's tolerance of it is a set thing or if it's based on "need." One night I took "too much" because I had tons of muscle twitching all over my body and muscle contractions. I just laid in the ER until they subsided. Is this always the sign of too much Mestinon or is it possible to become weak from too much only taking 30 mg at a time?
There were times when I was at my peak in my ivig cycle where I could take 60 in the am and go until 4 take 60 and then 30 around 8. So that tells me that it varies depending on need?
I've been having insomnia for past month because I can't seem to sleep for more than an hour and a half -3 hours without waking up breathless. I've been overbreathing during the day some and then at night I seem to be hypo when I go to sleep. The docs check every muscle but seem to ignore my breathing concerns. I had a Pulmonary Function test but I think it's possible to breathe ok during the day and hypo at night. I'm going to try to get a sleep study. Problem is I may have to take part of an Ativan to get to sleep and that makes it all worse. I am so ready to get back to where I was and I'm hoping that the doc will increase my ivig to every 2weeks --it's been at 3 for past couple of times. Anyone know if you can take too much Mestinon at those low doses and get weaker without first having extreme muscle twitching? I can't seem to take it closer than 3 hours apart. So far no issues with that. When I was doing well I couldn't even take it on an empty stomach without getting the twitching. Can we develop an increased tolerance?

[DesertFlower]

I have similar reactions to taking too much Mestinon, the muscle twitches and not being able to sleep very long as well as nervousness. These effects were really bad when I was taking 60 mg at a time, but it still happens sometimes when I take 30 mg at a time.

I was taking 30 mg of Mestinon 3 times per day (4 hours between and none at night) and it was working great for me for quite some time, about 6 months I think.

Recently I haven't been able to take so much and the amount I need has been varying greatly, I don't understand why but I am generally feeling better so that is good. Now, some days I need 30 mg per day and others I need 90 mg per day. On good days I am taking 15 mg per dose.

I am waiting until I feel the beginnings of weakness before taking Mestinon. I wish I could take more Mestinon to prevent these weak times, but the symptoms from too much Mestinon are scary for me. Recently, when I took "too much" Mestinon I was getting a rapid heartbeat and general nervousness. Also, it made me breath fast and shallow. Taking less Mestinon resolved these issues.

One more thing, when I get these twitches and other symptoms from too much Mestinon my muscles don't work properly, but the weakness feels different that from not enough Mestinon. I can't figure out how to describe it. I will try. With too much Mestinon, my muscles feel like they are vibrating and tense and they don't exactly feel weak but when I try to use them they don't function properly. With not enough Mestinon my muscles FEEL heavy and weak. Either way, the muscles are weak even if the feeling is different from too much vs. not enough Mestinon.

I hope this information helps.

[diva.baby]

I have never got to the muscle twitches but i was on a pill & 1/2 and my vision was very blurry ... i figured out quickly it was too much . im on 60mg 2-3 times a day

@joy

im in that situation now ,i am fine during the day ... so i had a sleep study and it showed i had difficulty at night ... gonna get a bipap now