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...
I am still worried about the IVIG with his doctor not knowing about MG or the Autonomic small fiber neuropathy. Do u all really think it is safe for it to administer 400 mg for 6 months with the first dose over 5 days and then pushing another 400 mg in one day the following months, thats just not how the Cleveland doctor wrote the script its says over 5 days and he said he was continuing the high dosage because my husband has several immune disease and they believe the start of his celiacger, he came home and had 2 go back 2 bed. Over the last 5 yrs, the first of which he was told all his issues where Blood pressure and stress related including vision, he went from chronic pain and fatigue keeping him down once in a while, and since August last year it was 5-6 days of solid bedrest a week. After Respirator Distress in March, we finally got Diagnosed but had to go to Cleveland Clinic to do so from Georgia, even Emory missed it, They said he may have MS too but did a non contrast MRI, on his spine and back, and MS shows with contrast best. They also said his stenosis and spondylosis showed and even those could cause lesions on the cord.
How many are disabled because I see my husband getting worse and worse. Yes he has OCULAR AND GENERALIZED MYASTHENIA, he said he didnt want the plasma if the IVIG didnt work, and wished God would take him as his pain levels are 10 latly and his already on fentenyal and roxicodone 15 x 4 day...please help..will he be disabled forever and if so, how do explain to insurance companies ur remission days and activities, as u know how they like to take videos of 3 days of no activity and one day of maybe a couple hours of normal activity and turn that into oh u can work, HE CANT and depression after 23 yrs he gave one company and not being able to do a job he loves has him even more down.
How many are disabled because I see my husband getting worse and worse. Yes he has OCULAR AND GENERALIZED MYASTHENIA, he said he didnt want the plasma if the IVIG didnt work, and wished God would take him as his pain levels are 10 latly and his already on fentenyal and roxicodone 15 x 4 day...please help..will he be disabled forever and if so, how do explain to insurance companies ur remission days and activities, as u know how they like to take videos of 3 days of no activity and one day of maybe a couple hours of normal activity and turn that into oh u can work, HE CANT and depression after 23 yrs he gave one company and not being able to do a job he loves has him even more down.
Sorry I know nothing of IVIG. I chose Imuran and prednisone instead because my neuro is 5 hours away. The only thing that has helped my pain is accupuncture. I have many different diseases and issues, but the only time I feel no pain is when I am on that table. It is a godsend for me, but I have a wonderful practitioner. It also gives me a very calm feeling that lasts for days even on prednisone. I wish you the very best. I know it is very frustrating right now, but there is hope. Hold on to that.
Ange