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?