Neurologists are agreed I have Myasthenia, not quite clear what type yet as I am seronegative. But they have tried treating me for autoimmune Myasthenia (the most common type ) with immune suppressants (while waiting for genetic test results)
First we tried steroids and they rapidly made me so weak that I was bedbound (constant rather than fatigable weakness so not the Myasthenia)
Then we have tried mycophenolate and again it has made me really unwell - weak and lots of muscle pain and no energy and practically bed bound.
Coming off each medicine has led to a huge improvement in how I feel
So I am wondering, have I just been unlucky and just need to try other immune suppressants or is this a clue to what is going on with my body? (We do suspect there may be something else going on alongside the Myasthenia)
Just wanting to pick brains really. Am seeing my neurologists in a couple of months but can't help but mull it over in the meantime.