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...
As the tests are negative, I think I would try to get as specific as I can about the symptoms. Keep a notebook and jot down what is the problem, when it happens, and where you think it is happening. For example:
Friday Oct 13 10 am had trouble carrying groceries to the car. Out of breath (or feeling weak in arms, legs ... etc.) Maybe you can start to see any patterns and you will also have a list of exactly what part of you is having a problem (eyes, arms, legs, breathing....).
You don't take the whole diary to the doctor, but study it yourself after a few weeks and see what you can pin down as the most common symptoms, when they occur and so on. Then you try to summarize it and when you see your doctor next time, you pick only one or two of the worst symptoms, tell him how often, when, and what level of weakness, pain, etc., you are having. Doctors just don't respond very well to overwhelming them with symptoms that are vague and intermittent. Maybe with details and limited information you can focus them on what is worst.
I worked most of my life with doctors (I was in research) and have heard them complain about how difficult it is to deal with general complaints of weakness, tiredness, etc, so getting them to focus on the main symptom or tow that seem worse might help get them to focus.
My mother had polymyalgia rheumatica (autoimmune system attacks most of your body) and her complaints of aching all over and fatigue were ignored (take tylenol) for many years until finally the doctor did a blood sedimentation test and found the sed rate was very high and began prednisone treatment (for the next 25 years).
Good Luck
Russ
When I was hospitalized in an MG crisis (breathing), at Mayo Clinic, about a dozen young neurologists in various stages of their residency came in to visit me and ask if it would be OK if they went through the MG exams and tests with me--those of strength, looking up, ice pack etc. I was probably the first MG patient they had seen in their 3-year residency. Each one had a different approach. Some were sort of shy and tentative--holding back on doing the full exam; others very open and thorough, insisting they get all the information, details, and completely learn what they could from me. Having recently retired from Mayo (where I was hospitalized), and having worked with many residents myself, by the time they were all finished with me, I knew which ones would be my choice for my neurologist. Doctors are people and people are very different and it mattered to me to find one who not only listened, but explained and learned rather than just proclaimed.
Hope you find out soon what is wrong
Russ