Myasthenia Gravis

[contentuser]

Questions to Ask Your Doctor about Myasthenia Gravis(Free Handout)

Overview


Myasthenia gravis (MG) is a chronic autoimmune disorder that results in progressive skeletal muscle weakness. Skeletal muscles are primarily muscle fibers that contain bands or striations (striated muscles) that are connected to bone. MG causes rapid fatigue (fatigability) and loss of strength upon exertion that improves after rest.


In early stages, myasthenia gravis primarily affects muscles that contr...Read the full article

[baselann]

This is a good general overview of MG. I was diagnosed with bulbar MG in 2005, and it has so far not progressed beyond bulbar symptoms. I read in this overview and many others, the frightening statistic of 85-90% of patients progress to generalized MG. If you are a MG patient, do not let this frighten you. Every case is different. I initally had high dose prednisone + mestinon, and then had a thymectomy (hyperplasia, but no malignancy) in 2006, continued on low dose prednisone 2.5 mg. I should have discontinued prednisone and taken azathiprine since the steroids caused me to have a hip fracture, which should not happen to a 38 yr old. I was doing a lot of long distance running, up to 80 km/week (definitely no generalized MG), and then had a stress fracture that was misdiagnosed as muscle tear, but then I completely broke it taking a step up a stair. With physiotherapy, I recovered, but then went on to azathiprine, 120 mg/day. The emotional trauma of this surprise diagnosis and the disability triggered a horrible 3 month intense flare of bulbar symptoms. Prednisone made it worse, and finally I was given IVIG therapy, a miracle treatment and transitioned to azathioprine, which takes a few months for full immunosuppressive effects. Take home messages for my case: (1) I really should have been on aza right after my thymectomy. (2) Prednisone is terrible for MG patients with risk factors for osteoporosis like me (3) In case of crisis, in my case, I will go straight for IVIG, even if I have to pay for it out of pocket (4) Maintain regular appointments with a neurologist who has treated at least a few MG patients and doesn't just load you up with prednisone (5) Have hope, don't believe all the terrible things you read about MG. Not everyone progresses to generalized. There are long remission times. I went from hell back to normal life after IVIG. (6) I am a clinical researcher in oncology, but of course I follow MG research for personal reasons! I have hopes that there will soon be better targeted drugs for more successfully managing MG, rather than just symptomatic or nonspecific immunosuppressive/modulator treatments for MG. Keep hope!