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...
Hello,, first I am sorry for all everyone is going through. My husband was just diagnosed in March after a year of being shuffled around. He lost a significant amount of weight, ended up collapsing, and spent 8 days in the hospital.. Finally a diagnosis and now I feel like I going crazy. He is on Pyridostigmine 60MG 4x a day and is to start Cellcept 1000 mg a day as soon as I pick it up.. The cost is out of this world but he has to have liquid as he still has problems getting any pills to go down. I have read all of the side effects along with all the comments that I can absorb here. I am trying to keep most of this inside so his anxiety doesn't worsen.. He has gotten a long of help with the current meds. Can talk again, eat most foods, muscles are very weak.. But he has had 8 back surgeries so were are not even sure how much of this is new or old. I am constantly scared as those days in the hospital were the most horrible he's ever dealt with. And after all of those back surgeries he has been through a lot.. Any help you can give.. concerning the side effects from the meds would be helpful. Thank you and praying for all.
I have been on cellcept / mycophenolat (generic cellcept) for almost 12 years, the only side effect I have experienced is an almost normal life. It is the only drug I take for MG. But, everyone is different with MG.
Best of luck
Terry in PA
The most important part of MG treatment is getting a neurologist you can work with and who knows MG patients well. Then you have to ask questions, explain problems (i.e. expensive medication) and get a working relationship with the neuro and the neuro's staff so you have someone you can contact easily about questions.
Cellcept is slow to take effect -- maybe months to a year and does not work with some folks and others can't tolerate it. There are other options, but cellcept is usually considered to have the least side effects. Often prednisone is taken with cellcept at first to get MG under control faster if pyridostigmine (we usually call it by the brand name Mestinon) is not enough to keep us functional.
Read, ask questions, listen and soon you will get familiar with MG, the treatments, the problems to watch for etc. Most of us get our treatments figured out, get things under control and do OK.
Good Luck
Russ
Exercise does not "help" MG. Maybe you could pass on the websites of popular MG organizations to your children. If they google Myasthenia Gravis, they should be able to find information. I was shocked to hear a person in my family tell me a year after my dx that she didn't realize that MG was "that bad". With the internet at our finger tips, everyone should be educated. Could your children go to doctor appointments with you?
I can no longer do a lot of heavy cleaning, so I have to depend on someone else to do it. I don't like it, but that's my reality. As a care giver and working full time, you may need help from time to time. It is very overwhelming for someone to be dx with such a debilitating disease. Accepting new limitations and a new lifestyle is not easy.
Barbel
I was in bad shape 5 years ago but now I can function pretty normally
I mean I appear pretty normal but I take real good care of myself now and my husband does most of the driving and I have made many changes in my life. My goal was to see my grandkids and I can do that so I think I am ok.