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...
Good luck ,
Annette
I had a very positive response to mestinon. Neurologist states not all antibodies have been researched as yet. Also said most people who are this positive to mestinon are not usually MUSK antibody positive so we are not doing that test.
For now I am just very happy to have a medication that helps this much. Marie
There are many of us here who are negative on the commercially available tests. There are at least two different antibody tests that pick up seronegative MGers and other antibodies are known, but those tests are not commercially available. The reliance on testing instead of clinical diagnosis has caused many of us to have to wait for diagnosis and treatment which is ridiculous given what is known about MG and the testing. Some are still waiting. b.
I have to say that I am not really surprised given that it was negative 9 years ago and I was half expecting it. He has said this does not exclude Myasthenia and asked to see me at the end of the month and to call him if I become weak again. There is no mention of an EMG (which I have never had) so I have asked very politely if he would consider referring me for one.....I hate asking as I think it must really annoy Dr's and they must feel like they are being told how to do their job but I don't want to wait to become bad again and feel like I'v come this far and might as well ask!
Speaking of EMG's - for those of you who have had one, if I was to be referred for one would it matter if It was carried out on a good or bad day? My symptoms do fluctuate depending on how much I do - I had a week off work and felt much better but after a week back the symptoms seem to be increasing again! So - I wondered if there would be a more accurate reading if I was having an increase in symptoms on the day?
Thanks again everyone - you are a great support and always so full of knowledge!x
Ollie