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...
Just back from my followup visit with the neurologist. Now that MuSK and LEMS are back and negative she says I don't have MG. She says muscle biopsy is too high risk and would likely be normal.She's never had a muscle biopsy show other than normal with a normal SFEMG and normal CK level. She isn't willing to put me on steroids or other immune modifying drugs as they would just mask what might be my real diagnosis.
So she says to put me back on the treadmill of rheumatology. It would be a year wait at the hospital in this larger centre. So she suggests the calcium doc working on my weird and rare calcium disorder who is two hours the other way from me should recommend someone in his city and see if I can get in sooner there. I saw a rheumie three years ago who said my Sjogren's was too mild to treat at that stage. And of course the mestinon helps with the dryness issues.
So after a few tears of frustration we've headed out for Thai takeout and I'm set to enjoy the visit with my son (although the weather is b.... cold!). We visit my daughter on Saturday so this not a completely wasted trip.
So I'll still pop by occasionally as the "You know you have MG if" seems to describe me better than lupus does. But you've all been so wonderfully supportive and I'll miss you!
Flutebell, the frustrated.
So she says to put me back on the treadmill of rheumatology. It would be a year wait at the hospital in this larger centre. So she suggests the calcium doc working on my weird and rare calcium disorder who is two hours the other way from me should recommend someone in his city and see if I can get in sooner there. I saw a rheumie three years ago who said my Sjogren's was too mild to treat at that stage. And of course the mestinon helps with the dryness issues.
So after a few tears of frustration we've headed out for Thai takeout and I'm set to enjoy the visit with my son (although the weather is b.... cold!). We visit my daughter on Saturday so this not a completely wasted trip.
So I'll still pop by occasionally as the "You know you have MG if" seems to describe me better than lupus does. But you've all been so wonderfully supportive and I'll miss you!
Flutebell, the frustrated.
Don't worry about staying here -- a lot of folks have had many years of uncertainty before finally getting a diagnosis, MG or otherwise.
Many immune system diseases are treated with prednisone -- not just MG, so you might ask your doctor to try a short test (6 days @ 20mg or something like that) of prednisone to see what it does. If you get quick relief that could hint at what is wrong. Normally MG takes a long time to respond to prednisone. With 5 or 6 days of prednisone you don't have to taper it off. Just knowing your problem responds or doesn't respond does give the doctor information.
Good Luck
Russ
Russ
Today walking to a museum and shopping required my walker as my feet started to drag and get heavy. Sounds like MG to me but the neuro said it could be the effect of the calcium disorder as the calcium in the muscles might drop with using the muscle. At least she knew that blood levels are not necessarily representative of actual muscle level. I'm sure I have some kind of an antibody blocking the functioning of either the calcium sensing receptor or the acetylcholine receptor.
I guess I just have to get worse for someone to risk treating me more aggressively. But with a low white blood count already my options are limited so I'll have to stay with the mestinon and a walker and "mystery diagnosis" in my chart. I've googled the small choice of rheumatologists in my city and will need to head somewhere bigger.
Flutebell