Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
I was diagnosed with MG in May 2012. Since then I have this week first run into another person who actually has MG to talk to in person.
He has had MG for about 1 year, is about my age (I am 68) has it mostly under control with prednisone and is trying to taper prednisone to the lowest dose possible (at 20 every other day now). Very similar to my own progress and schedule. He even has similar complications of very high blood sugar that is now gradually coming down to only moderately high. He is switching to cellcept as he tapers prednisone.
Anyway, in three years I finally met someone in person who has MG. He, like me, read widely on MG and has taken time to try to understand exactly what is happening and why and is involved in measuring his progress with sort of an engineer's view of things, like my scientific view of my own condition.
During the 3 years since my diagnosis (achr +), I did meet a few hundred folks with MG on this forum, so never really felt isolated. Many have gotten control and moved on, a few passed away, and some are still in the struggle.
I continue in drug-free remission now for 27 months, but sometimes think I have signs of MG returning, but they go away with a little extra rest, so things are pretty good.
Hope your luck is good too
Russ
He has had MG for about 1 year, is about my age (I am 68) has it mostly under control with prednisone and is trying to taper prednisone to the lowest dose possible (at 20 every other day now). Very similar to my own progress and schedule. He even has similar complications of very high blood sugar that is now gradually coming down to only moderately high. He is switching to cellcept as he tapers prednisone.
Anyway, in three years I finally met someone in person who has MG. He, like me, read widely on MG and has taken time to try to understand exactly what is happening and why and is involved in measuring his progress with sort of an engineer's view of things, like my scientific view of my own condition.
During the 3 years since my diagnosis (achr +), I did meet a few hundred folks with MG on this forum, so never really felt isolated. Many have gotten control and moved on, a few passed away, and some are still in the struggle.
I continue in drug-free remission now for 27 months, but sometimes think I have signs of MG returning, but they go away with a little extra rest, so things are pretty good.
Hope your luck is good too
Russ
I've also been involved in our local MGFA support groups, MGwalk and attended the MGFA conference in Philadelphia last year. Very uplifting for me!
So, if you are ever in MA, let me know!
Did your new friend know about our site ?
I got a compliment on my stool from a woman who! saw me sitting in the shade resting for the walk back to the bus. I mentioned I had problems with my muscles and when she said "What kind of problem?" I went for it and said MG. Her husband has MG too. So we were able to chat a bit on walk back. What a great moment, finding the only other person with MG on huge boat, standing 5 feet from me and my handy stool.
Flutebell
Something about that fellow feeling in knowing someone is dealing with the same issues you are....
Of course other friends and family are important and try help, they don't have the true understanding of what we face and battle each day like another person suffering the same issues. This site is the best thing that has happened to me since I got sick. Meeting someone in person I am sure is great, I am blessed and relieved to meet everyone here, Including you.
God bless you, and may everyone here keep sharing and strenghtening each other with love and support.
Hugs,
Debbie