Hey Tina,
I'm from Georgia as well. May I ask where are you being treated for your MG? Symptoms are usually worse at first, and then hopefully you can get a treatment plan that works for you to prevent flate ups to prevent hospitalization. I was diagnosed in 2012 as a double seronegative MG patient. Which made my MG extremely hard to treat. My MG was caused by the LRP4 antibody. Which at the time was really new and the doctors had very little information about. I was told that my blood serum was so toxic that it gave the lab mice MG and then they died. That was what my doctor told me about being diagnosed with MG with LRP4 antibody. I was treated with the same medication as a regular achr and musk antibodies positive patients were but the treatments were not working so I was continuously getting worse. Weaker and weaker. I was hospitalized and given plasma exchange treatments for 5 days and it seemed to help for a week or two but then the weakness and severe fatigue came back. I have tried every medicine they could give me. Chemotherapy drugs, and IV treatments, plasma exchange every week for years. But your body can only handle plasma exchange for so long so I had to stop that. I was unable to do IVIG because I had low antibodies to the IVIG and if I took it I would have went into shock. I had a friend who did IVIG and she had wonderful results and doing well. I'm currently taking a IV treatment every two weeks at the Cancer center in Athens as a maintenance type medication to prevent flare ups and to keep me from going in the hospital. My weakness is worse on some days than others. But not every person with MG is the same. Symptoms are different, pain is different, and how you handle each day and your attitude towards your diagnosis has a lot to do with how your disease also affects how each day goes with MG. Always make a plan for each day and if it gets done great but if not it'll be there tomorrow. Always allow yourself grace, mercy and love and those around you. They don't know what your body is going through and you have to be the one to educate people as to how you feel and what you need. My husband is wonderful to me and supports me on my MG journey. My family acts like it doesn't exist and that I can do everything just as before. I have to remind them that I can no longer do somethings that I once could. They reply oh!
So people don't think you have an incurable disease because you may not look sick, when your body is screaming at you to go sit down and rest. Listen to your body it will tell you what you need. Eat a well balanced diet, drink plenty of fluids(water) and get rest every time you can. I'll keep you in my prayers and I'm always here if you have questions or just want to talk.
"MG doesn't define me"
God's blessings
Kim Roach
Canon, GA

Thank you for your reply.