My muscle weakness started with double vision after I had a meningitis/encephalitis during my second pregnancy. The doctors blamed it on the disease. Five years ago I was diagnosed with psoriatic arthritis and Ehlers Danlos syndrome, possibly type 3. I take plaquenil and methotrexate to control the inflammation in my joints. Three years ago - out of the blue - muscle weakness hit me really hard. I had problems with chewing, swallowing and breathing. The neurologist told me it could be MG, but the tests came back negative. I had RNS EMG and a single fiber EMG of my eye. I was dismissed.
I muddled on, but last April talking became almost impossible, and I had to start using a wheelchair since my legs became to weak. My PCP sent me to another neurologist who revised the tests that were performed earlier. Same outcome. Blood tests still negative.
Unfortunately my lung function has deteriorated rapidly and I was admitted for tests to determine if I needed nocturnal ventilation. So far, that's not necessary, but my coughing force is extremely low and I had to start air stacking.
Current situation: slurred speech, difficulties breathing, restrictive lung function disorder, difficulties swallowing and chewing. Neurologist number 3 thinks it's MG, but does not offer any treatment since the sfemg of 2012 was negative and I have no antibodies.
The pulmonologist says: neuromuscular disease, but offers no treatment because I don't have a real diagnosis.
I've lost my health, my job and a large part of my life. I think it's cruel to treat people like this. I already have another autoimmune disease plus a hereditary connective tissue disease, EDS. Why not offer me a test treatment? I have all clinical symptoms of MG. Everybody says I have MG, but they can't prove it. Sorry about the rant and thanks for listening.