Interesting stuff. I assume the risks of it are worth what it does? I think that is my biggest fear. I rest most days, and don't really have an active life, but it is manageable I guess. Would I love to be more active, sure, but I guess having been inactive for 8 years, 4 of them confined to a chair due to my ex, I'm used to being inactive. So I consider my MG managed for the most part without drugs, and am really afraid of what might happen. But reading what you guys go through, while scary, makes me feel like it is worth it, so I don't think I will refuse if it is suggested. The desire to be more active is definitely a factor in me wanting to get more help. The ER visit the other week is another, plus the falling.

If mestinon gives you any benefit I would try to work with it, as it is (as far as I know) the safest of the myasthenia gravis treatments.

Prednisone is horrible for you, as you can see from other replies. If it doesn't work or isn't worth the side effects don't push it.

I will warn you I had amazing results with IVIG the first time, but was unable to tolerate it the second time we tried it. However, you might want to do it anyway if you can battle the insurance company for it. I think you should have a lot of pull for an immediate treatment based on the fact that you are falling so much. Doctors do not like people to fall, ever, so many bad things can happen from it. So be sure to bring that up with doctors/insurance people.

In the meantime avoid stairs as much as you can, and ask your doctor for a handicapped parking permit if you havent. My doctor was more than happy to give it to me but didn't think of it until I asked. Also try to find railings wherever you go, especially on stairs. If you have stairs in or around your house without railings, either avoid them if you can, or install some. I used to live in the basement but fell all the way down the stairs several times before we put in a railing, which turned out to be pretty cheap and easy for my dad to install. No stair falls since then :)

If a cane or walker will help stabalize you use them, even though it's embarassing. You really need to avoid falling any way you can, especially down any kind of stairs. For me, my arms were as weak or worse than my legs, so those things didn't help, but if you think they might help you then at least try them please.

I have 12 stairs in my house to climb to get upstairs, in 2 6 blocks. Both have rails, and a lot to grab onto so I normally can make them up ok. I don't normally go upstairs unless I plan to stay up there for awhile, or to eat. I am downstairs because of the walk in shower. I can't lift my legs over the tub, without a major song dance and prayer, so being down here is far easier for me.

That's a shame that the IVIG didn't work the second time around for you. I wonder if it will be the same for me or not. I plan on talking to the doctors about that when I see them on the 16th. I was intending to ask for a handicap thing for my parents car because walking that far sometimes can be tedious. I normally won't go out unless I feel strong enough, but there have been a few times that I was forced to go out because I really needed something and it couldn't wait.

Thanks for all the advice and guidance. You guys are so nice and helpful, I don't know what I would do without you all.