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 MG is mostly swallowing, voice. It has been under control with
Just 15/5 alternating days of predisone of about 8 years. Suddenly it has gotten worse. I had IVIG the end of April which did nothing. In June I had 5 rounds of Plex which I did very well on. It helped tremendously.
Now it is wearing off and I hopefully will be able to get it again next week.
I was wondering if anyone has facial numbness. I have it from under my cheeks to under my chin. All around my lips especially. The PA at the neurologist office told me it is not an uncommon complaint the MG'ers report. My facial muscles have especially around my mouth have drooped a lot. I no longer have much of a smile. I am currently on 40mg of pred. Hopefully that will start to taper also.
The Neuro also would like me to start Cellcept. I hopefully will be able to do that soon. Any advice on cellecept?
Thank you!
Just 15/5 alternating days of predisone of about 8 years. Suddenly it has gotten worse. I had IVIG the end of April which did nothing. In June I had 5 rounds of Plex which I did very well on. It helped tremendously.
Now it is wearing off and I hopefully will be able to get it again next week.
I was wondering if anyone has facial numbness. I have it from under my cheeks to under my chin. All around my lips especially. The PA at the neurologist office told me it is not an uncommon complaint the MG'ers report. My facial muscles have especially around my mouth have drooped a lot. I no longer have much of a smile. I am currently on 40mg of pred. Hopefully that will start to taper also.
The Neuro also would like me to start Cellcept. I hopefully will be able to do that soon. Any advice on cellecept?
Thank you!
I can sometimes feel when my face droops... like something is pulling it down. I have described it as "1/4 or 1/2 of a golf ball weight in my cheek, chin or jaw". I can actually feel it slide... then I look in the mirror and can see it.
Does that relate, or is this sensation something totally different?
Try the CellCept. It takes a while but can be very effective. No time like the present to start.
Good luck,
Curt
Cathi
They talked about putting one in my arm next. Are you taking medications also?
Thanks everyone for the responses, it always makes me feel better that I am not alone in this.
I had PLEX, 5 treatments, before my thymectomy this time last year. I had a quinton catheter in my neck for about two weeks. I am about to have another single PLEX treatment and they will use peripheral lines, one in each arm. My neuro isn't on board with long term PLEX and told me he would recommend an AV shunt in my arm (like a dialysis port) if we were to do longer term PLEX. I am so very not interested in that. We will have to see how it goes. I have IVIG every three weeks and take mestinon 90mg every 4 hours and timespan at night. I had IVIG last week and haven't seen any improvement from it. I will call and set up the PLEX next week and then have IVIG again right afterward. I hope it works better. I feel cellcept or imuran, etc, may be in my near future.
Cathi