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...
The receptionist said it's going to a " good little wait".
I wanted to ask her if she knew what part of sitting in a hard chair with my kind of pain is good. I just smiled and thanked her.
I'll be back ASAP to let you know how it goes.
Jerry Mc
I wanted to ask her if she knew what part of sitting in a hard chair with my kind of pain is good. I just smiled and thanked her.
I'll be back ASAP to let you know how it goes.
Jerry Mc
I had my first SFEMG on the 21st of last month, but still have not received the results.
I will write an update as soon as I get the results.
Jerry I hope all went well and can help with your diagnosis.
Joe
He says that he can almost certainly say that I do not have MG. He says it's not 100% but with my symptoms, blood work and the SFEMG results it would be a million to one chance or more that I have MG. He worked for years at the Duke Univ. MG clinic and said "from my experience I can assure you that you do not have MG."
He's doing more testing and going over all my past test results and see what he can come up with.
Soooooo It's great if I don't have MG but after 5 years I was just happy to finally have a diagnosis. I just don't know whether to cheer or cry. That's not true,,, I can't stop crying now.
For all we know you are leading the way towards another diagnosis that help us make sense of negative tests and positive symptoms that many here deal with.
Basically you cant get away from this group that easily my friend :-) you are family here and thats what important....
Hang in there sometimes the diagnostic journey is about as fun as the treatment journey....and please be sure hang around we all look forward to sharing your journey and supporting you as we can
Joe
I think you may have something that is not MG going on. After all you had RMSF and have worked in areas that may have Lyme and have pain that seems to be more than just joint instability. BUT I have gotten to the point when a doctor looks at TESTING and says "you do not have blah blah blah" (especially if that phrase is repeated) and there is good physical evidence for "blah blah blah," then that is definitely what you have!
I speak as a doctor and patient and someone with 35 years of NOT having MG (or anything else for that matter) to maybe, to having, to being treated. Hang in there. Our experiences are needed, especially if there is treatment out there for a mimic. But if you are symptomatic responding to treatment for MG, it is cruel, and in my mind totally unprofessional, to take the diagnosis and treatment away without providing the support and treatment for what they imagine you do have or until there is a definitive diagnosis.
hugs and hopes for better days, b.
b, thank you as well. I value your opinion and your input here. You have and continue to be very helpful. I not taking his diagnosis lightly. I said then you figure out what I do have and he is going to try his best to do that, He is retesting for Lyme because of my job. He said sometimes it takes several test to show up. No one has ever tested my testosterone levels either which infuriated him. Three different doctors refused to test it and he says that should have been the first thing they checked. It would be great if that is it. Thanks for your support.
Strizz, thanks for the info. I've always thought that my issues started with the brain-muscle connection because it all started when I got Meningitis.
Barb.