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...
Hi all, so here's the scoop, just here to introduce myself. Started having muscle weakness in my legs about 9 months ago. I coordinate events so after events I was finding I could barely walk (not a lot of pain, just heavy legs and weakness). My primary care doc was stumped and send me to neuro MD. Neuro MD did some testing and said he's THINKING MG. He's put me on Mestinon (pyridostigmine) and now I'm awaiting MuSK test results.....
Most of my symptoms have been weakness of legs, general fatigue and just "feeling hit by a truck" some times. Many ups and downs. A bit of difficulty swallowing, but very little ptosis if any.
Question, it seems like official diagnosis is tough, but after MuSK test, what's next? Already did 2 blood tests, 2 tests where they put the needles in my muscles and 'zapped' me, etc....
Great group and thanks everyone. Hope all are well.
Most of my symptoms have been weakness of legs, general fatigue and just "feeling hit by a truck" some times. Many ups and downs. A bit of difficulty swallowing, but very little ptosis if any.
Question, it seems like official diagnosis is tough, but after MuSK test, what's next? Already did 2 blood tests, 2 tests where they put the needles in my muscles and 'zapped' me, etc....
Great group and thanks everyone. Hope all are well.
Is mestinon giving you a bit of relief?
We welcome you to the group.
Sorry about the difficulty swallowing. Be careful. Rest and limit talking is you are having trouble swallowing. If you feel your breathing call doc.
I had most problems in the beginning before I knew what to expect.
What makes this disease so different from our usual illness is
It does not pass or get better unless you rest. If we push our self we get deadly worse. That was the hardest lesson to learn. Our culture teaches push push push .
We are here for you I wish I would have had this group in the beginning. It would have saved me a lot of grief.
IVIG, and taking extra vitamins and supplements has helped me greatly.
Keeping this short (er), it's the third time I've tried to post, in reply. The reply keeps disappearing. So Will see if I can figure this out, and try again later.
Will try this one question. Did you already have the AChR blood test? Before the MuSK blood test?
The electrode tests, called EMG tests. They are not reliable, in diagnosing so called "early onset" MG.
Don't be surprised if you have passed the EMG test, meaning no MG. That has happened to many of us.
Luckily work is slowing down a bit so I'll get some time to work from home and rest...the mental aspect of this thing is the most frustrating...as I preach to the choir.
Seriously, thanks all!
GREAT info everyone..thank you.
Thanks!
Tye
Fear is basically almost worse than the disease in the beginning.
Is is very hard especially in the beginning.