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...
My husband has MG, Celiac, Autonomic neuropathy small fiber, peripheral neuropathy, degenerative disk dis., spinal stenosis, spondylosis, hypertension, low vitamin levels, amino acids, and testerone and sleep apnea.
In march he was taken by ambulance in mild respiratory distress and spent 5 days in hosp, this was prior to diagnosis of MG and is now thought 2 be a crisis as his mg went undiagnosed for yrs in fact its consider advanced generalized mg.
Well he has been upset due to having his disability insurance filming him doing a few hours of light activity, and then no activity for 2 days they are saying he can work when truth be told he had just had several days of IV steriods prior 2 the video and spends 80 percent or more of normal days in bed or resting due to pain and muscle cramps/fatigue. Well after
stressing over this he has been in bed since Saturday and I know he has been using his inhalers and having off and on wheezing, he also feels like he is swallowing his tongue, his ears are ringing, his bladder isnt responded well and when when it does smell of sulfure, and his voice is raspy..he is in tears from the pain level being so high. He is wobbling when walking due to balance and even lost all vision a few moments last night. We have a prescription for IVIG but are waiting 2 see the oncologists next week, a new dr. The doctor who prescribed is in cleveland and we r in georgia. I am scared something is wrong, he even is startingt to sound nasal congested
In march he was taken by ambulance in mild respiratory distress and spent 5 days in hosp, this was prior to diagnosis of MG and is now thought 2 be a crisis as his mg went undiagnosed for yrs in fact its consider advanced generalized mg.
Well he has been upset due to having his disability insurance filming him doing a few hours of light activity, and then no activity for 2 days they are saying he can work when truth be told he had just had several days of IV steriods prior 2 the video and spends 80 percent or more of normal days in bed or resting due to pain and muscle cramps/fatigue. Well after
stressing over this he has been in bed since Saturday and I know he has been using his inhalers and having off and on wheezing, he also feels like he is swallowing his tongue, his ears are ringing, his bladder isnt responded well and when when it does smell of sulfure, and his voice is raspy..he is in tears from the pain level being so high. He is wobbling when walking due to balance and even lost all vision a few moments last night. We have a prescription for IVIG but are waiting 2 see the oncologists next week, a new dr. The doctor who prescribed is in cleveland and we r in georgia. I am scared something is wrong, he even is startingt to sound nasal congested
hugs,
Jen
He tried 2 get up this morning, and after 25 minutes of moving around he has been in bed since, his vision is crossing blurred, and he is having spasms, his wheezing is better he is doing a steriod inhaler x 2 different ones, he still seems to be laboring at times. They did place a call 2 Doctor Gupta and we go 2morrow at 8. He is the oncologist/hemo doctor, but what can he do besides IVIG and will he understand MG and small fiber neuropathy?
Jen