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...
Hubby had a EMG Repeative and Pulmonary test( He was having a good morning but the EMG showed titers and Pulmonary was good but had some low levels...
They increased Mestonin to 60 mg every 4 hours. He has stomach cramps and rumbling, and has had one dizzy/sweating spell. With a chokin spell on saliva Sat. and weakness today generalized. MG was always a come and go roller coaster, and it still seems 2 be. He saw the thymectomy surgeon who told him a thymectomy is hard to see so they just scrape all the tissue and fat and would have to do it by sternum surgery. He said he doubt it would help as we had a good cat scan clear.
His neuro is questioning the pain and says its not MG related. DH was diagnosed at Cleveland Clinic with Autonomic Small Fiber NEuropathy and the local neurologist is question rather his meds caused the positive result. Well we where required to come off all meds for a certain period before testing.
I feel like giving up..wel then social security denial came
They increased Mestonin to 60 mg every 4 hours. He has stomach cramps and rumbling, and has had one dizzy/sweating spell. With a chokin spell on saliva Sat. and weakness today generalized. MG was always a come and go roller coaster, and it still seems 2 be. He saw the thymectomy surgeon who told him a thymectomy is hard to see so they just scrape all the tissue and fat and would have to do it by sternum surgery. He said he doubt it would help as we had a good cat scan clear.
His neuro is questioning the pain and says its not MG related. DH was diagnosed at Cleveland Clinic with Autonomic Small Fiber NEuropathy and the local neurologist is question rather his meds caused the positive result. Well we where required to come off all meds for a certain period before testing.
I feel like giving up..wel then social security denial came
IVIG therapy gave best relief--with no side effects--which lasted for four months; then I got another set of infusions, hoping it'll last at least as long as the last one. I've got only ocular mg, though, so I can't say whether this would work for everyone, esp. in cases where mg is more general. But I do recommend the IVIG!
Hugs, I wish I could do something besides pray and comisserate but it is all I have got.
Jen