Hi Becky,
Welcome to the site! I hope you are finding someof the answers you are looking for.

I'm a pretty standard generalised Myaesthenic - I started with double vision and ptosis, speech problems, then massive problems with my legs, arms and core strength. Luckily I've had very few problems with my breathing and have never had a crisis which resulted in ICU. I did want to say taht some of your comments really ring true with me though - the not being able to raise yourself out of a chair. And using your arms to help support you walking, even balance (although with me it was not so much balance from head issues, but because my legs were unable to steady me so I felt unbalanced). Although I don't feel any burning or any pain with my weakness I do feel like my muscles are strained - like the shaky feeling you get from a major workout - but I get it doing the most normal of activities - e.g. washing my hair.

I've not had a thymectomy ( I was told that because everything looked normal with my CAt Scan there was no need for one) although I've been trying for years now to be re-scanned or just to have the procedure done. If it's my only chance at remission, then I want it done! However, my neuros disagree and I guess they know best! I take mestinon every 3 hours like clockwork, 150 mg of azathioprine daily, 40 mg of pred every second day and a whole range of other meds to deal with side effects of these wonderful pills! I've had IVIG once but it didn't agree with me - no headaches or sickness, but i was so weak after that I was bed-ridden! Kind of the opposite effect for whatever reason! Thankfully for the moment things seem to be okay. I'm still weak at times but able to work full-time as a teacher and lead a "normal" life.

Hope some of this info helps you out! Take care of yourself!
~Kathy