I'm glad to help. When I was diagnosed back in 2000 (yeah, it took 42 years), people here were amazing.

I think that bringing a list of questions to the neuro is a good idea. When dealing with a new disease, it's easy to forget what you'd like to ask! Doctors tend to have their own routine of what they want to say. That might not be the same as what you need to hear!

I'm glad they're being proactive with the PT, but many people just don't "get" MG. They don't realize that we have a static amount of acetylcholine (ACh) going to our muscles. The more we do, the more ACh we need. But the body just can't supply that to the muscles. This quote from Top Gun kind of says it all:" You're ego's writing checks your body can't cash!" We're doing things that our bodies can't handle.

Neuros worry about overdosing with Mestinon, causing a cholinergic crisis. Well, if the dose is reduced a bit and taken more often, then that can be avoided. There are articles on PubMed that detail how taking anything over 100 mg at a time "can" flood the neuromuscular junction with too much acetylcholine. Of course, everyone is different, and some people can tolerate more.

Just as an example, I take 90 - 100 mg. every three hours (sometimes every 2-1/2) round the clock. But I'm not a good example. I can't do the other drugs. I am on a steroid inhaler for asthma, and that does help MG. But I have to rely on common sense, Mestinon, and rest.

Steroids are not fun to be on long-term, so I'm glad your docs will wean you off of those. They cause more problems than they solve. They can be a good rescue med in the hospital, along with IVIG though.

Take some time to read up on MG before your appt. and write down questions. Some questions, though, neurologists might not be able to answer! They can't imagine what living with MG is really like.

I hope you can find a treatment that you can live with, and will go into remission. Make sure that you check the cancer history in your family, if you are considering going on an immunosuppressant. If you do, stay out of the sun! A lot of people can get skin cancer while on those. I know, more awful info. But that's the reality of these choices.

Holler if you need anything!


Annie