I just wanted to update you all on my appt today with my Hemo. Overall it went well although I spent more time with him today than ever so I know he is taking this very seriously. He did a CBC which came back pretty good overall. I do have some low and high counts but he is sure they are Pred related. My platelets were up to 485,000 which is still good but quite a bit higher than last time I had them checked. I asked him if he thought the ILD would reverse itself since I am off the Agrylin and he said he honestly didn't know. This is a pretty recent finding and they haven't done enough research yet to see if it does reverse over time. I also asked him if he thought it was possible the MG was brought on by the meds and he said no. I was a little disappointed to hear that because I kept thinking if it causes severe muscle weakness maybe these people have MG and don't even know it. I guess only time will tell how much I recover from the Agrylin but he agreed I can never go on it again. If we can't keep it under control with aspirin then I may have to go on a chemo drug used to reduce platelets. My fingers are crossed that I don't need that. I tried that drug several years ago and my hair started falling out!

He also ran a mutation test to see if this has the potential to turn into Polycythemia or Mylofibrosis. I am so glad to have this test done since my mom also had both of these blood diseases. He said if it is positve he will treat it much more aggressively than if it is neg. I am scared to get the results of this but it can't be any worse than not knowing.

I know this may be off topic since this is an MG forum but just wanted to let you all know where I was at with things. I hope all of you are doing well!
Kendra