Lets talk reality with MG
I have been diagnosed with MG for going on 4 years now. I am 73 years old. I have come to the belief that this disease is really tough. With the people I have interacted and or met with this disease, no 2 people are the same. I really do believe now how difficult it is to diagnose. In the beginning My PCP was convinced I had Lyme disease, then Lupis, then MS, then Rheumatoid Arthritis, and then finally after 7 months, failing a swallow test, and getting the electrical shock tests to the nerves in my neck, I was diagnosed with MG.
Currently I receive IV/IG infusions every 14 days. I am also on 2000 mg of Cellcept every day. My body did not like Pyridostigmine at all, and prednisone made me gain 60 pounds. The constants for me is I have no balance, i sometimes get dizzy. I cant walk without a cane or a walker, and I can walk long distances at all. My ankles always feel like they are broken. My leg muscles and thigh muscles along with my hands and shoulders seem to not want to work very good all the time. My vision has improved, my choking at night if i am sleeping flat has gotten much better, and my swallowing has improved. I have just been approved for Mobility with the VA. Sometimes i get short of breath if I try to do a lot of strenuous activities like walking from the back of the house to the garage. So......how many of you have the exact same symptoms and results as I do. What are your daily symptoms like with your can and cannot do's. What meds are you taking.
Would love to hear from some of you.
Thanks Steve D. New Prague MN.
Hi 779. I'm not far away in Northern Wisconsin. I am 77 and have all those same symptoms. I take azathioprine and 5 mg prednisone. Twenty pounds weight gain. I can walk carefully around the house but use a rolling walker to get around outside. I can't stand for more than a minute without getting tired. I don't have any advice for you except to tell you that when I force myself to walk more and have a very hard day, I feel better and get around better the next day. I think exercise is really important, but it's a struggle to get enough. It's so much easier to sit in a chair. Then you have to balance the benefits of exercise against the risks of losing balance and falling. MG is not fun, but it is sufferable. I once asked my mother how she managed to endure life at age 95. It's easy, she said. Step, step, breathe. Then step, step, breathe. Then step, step, breathe.
Best of luck to you.
