Reply To: Working with MG diagnosed as a senior

[Community Member]

Hi my name is Monica and I am new here I’m not a person to type what I want to say I am more of a face to face person but here goes.

I was diagnosed 9 years ago and I think I have had MG maybe since high school as I think back.

My main sx. was SOB I say a pulmonologist and I really give her a lot of credit she ordered a lot of blood test and a MRI and sure enough I have MG. I have been on pred, mestonon, imuran, cellcept, IVIG plasmaperisis and now on Soliris for 2 years. My doctor wants to  start that new drug that was just fda approved Vyvgard I’m not sure if I want to as I do travel a lot and you take it once a week for 4 weeks and not again until you havea sxs. and that is what makes me nervous as I don’t want to be somewhere and start feeling bad. I still have good days and bad days,nothing has put me in remission. I also have another rare disease Ramsey Hunt which makes me look like I had a stroke.I sometimes get down about these diseases but then I see other people who are worse off then me.I was havaeing alot of issues at my work also I had to get disability and thank God I got it. I do work 1 or 2 days a week which is just enough.Well enough thanks for listening I need to go and relax talk later.