[Alan53]

I wonder if anyone else can manage without any drugs
I've gone a year now with out any drugs I was on steroids 1st for a year then 6months width out then another 6months on but I'm coping quite well
Without any drugs what helped me was going to a Gym were I slowly improved my muscle strength and then using the treadmill I was able to improve my breathing problems breathing and swallowing unproved thou walking still was differcult I rest a lot but have good times in the morning and early afternoons
Found that I have brain fog this last year that scares me
Worse was being told that I don't have MG but have c.f.s.
I did find out that their was a research done on high level of calcium helping MG patients and with me having parathyroid maybe that explains why I'm able to do what I can
Worse part of having MG is not being believed that you have it

[StephC]

I have found there are soooooo many worst parts - not being believed (by doctors, by friends/family) not believing myself, havng times i feel like maybe will be ok only to hours later have that rug yanked right out from under me, etc!

[Anacrusis]

Originally Posted by Alan53

but I'm coping quite well
Without any drugs what helped me was going to a Gym were I slowly improved my muscle strength and then using the treadmill

Mine was kind of the opposite to yours - even gentle exercise would aggravate myasthenic weakness and it did not help to build stamina (no drugs at the time also) Maybe that depends on what stage of a disease process you are at. Gentle exercise is good lately (....finally!)

Quite a few years ago I also had severe, heavy velvet curtain brain fog hanging over me for 2 years. Absolutely the worst thing is constantly not knowing if you are stuck with it for life or not. Mine went away completely without help from any changes in my psychological well being whatsoever! Which actually shocked me into a realization that doctors can be SO wrong!
In my country the last thing I read was that they have run out of funds for promising results using Ritubmax for M.E. patients who are found stashed away in dark bedrooms 24 hours a day feeling that to sit up in their beds is tantamount to having run a marathon......

Itīs a long lonely and scary journey doing it all on your own.

I made it....So there is hope

Anacrusis