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, have had the initial MG lab work with negative results and a EKG with shocks from hand to jaw that was negative. Dr's have dismissed need for any further testing despite the fact that ice makes my facial droop go away instantly (said it happens all the time with other conditions as well and no need to consider MG.) I have severe fatigue with muscle weakness including falls, facial droop, swallowing and speech problems all later in the day. The only thing that has helped so far is rest, ice and huperzine (herbal for MG). They continue to dismiss these treatments as they don't see the connection. Have diagnosed me with severe small fiber neuropathy and tell me that is the reason. For fatigue, weakness and falls as it is a auto immune disorder often accompanied by other immune disorders.... what can I do now to get them to order the next MG test? I feel that is what it is since heat, cold, activity, fatigue and certain medications make it severely worse. Most recent is a cipro reaction with severe increase putting me on short term disability, was told the med reaction was/is not related to my symptoms getting worse... any suggestions?
I know of one person here in Iceland that was diagnosed just by symptoms and positive icepack test. He was then put on trial therapy of Mestinon and as his symptoms subsided it was thought to be enough to diagnose him with MG.
I myself am in the process of being diagnosed with MG also. My symptoms are classic, double vision, difficulties swallowing, difficulties breathing and and muscle fatigue on repetitive use and gets better after rest. My blood test was negative (anti-AChR Ab), repetitive nerve stimulation was negative, but single fibre EMG was positive. Still they wanted one more test and where thinking of Tensilon test. They have not tested for MusK Ab either. So those are test you might want to be get done. In my case they where not done (jet) because I was admitted in the meantime to the ER because of shortness of breath. They didn't want to waste more time and I'm on the brink of staring a diagnostic trial medication therapy of Mestinon. But the problem is that the medicine is not available in my country and has to be ordered abroad so I have to wait for at least week.
Good luck with getting diagnose and treatment. Your symptoms sounds very familiar to me.
I have started the trial treatment but still not getting better. The dose is gradually increased and still to low to matter. Now I can't smile like I used to and the frown that has replaced my smile will not stay for long. I'm getting impatient to see results so I can jut imagen the frustration you are going through. Hang in there and take care.