Myasthenia Gravis

[marilynrn]

I was diagnosed with MG in May of 2007. Fortunately for me I was diagnosed rather quickly by my primary care Dr. but, I have a neurologist who seems very skeptical of my symptoms. I too have generalized weakness and decreased stamina which he says are out of proportion to his objective findings. Initially I was hospitalized and had plasma pheresis, after I went home I had no energy, difficulty swallowing, and just breathing. I was on Prednisone 60mg every day and until I saw a pulmonary Dr. who said I was having adverse effects to that I was miserable. I now get IVIG treatments every month and am on Cellcept along with decreasing dose of Prednisone. I still have all the muscle weakness but am able to do more than I was. I also have numbness in my extremities that no one seems to know how to deal with. This seems to be such a long slow process and I know I am fortunate in my disability from my company. It's nice to know others with this also have similar symptoms.

[flowergirl]

Hi: I was diagnosed on May 2006 and started taking Mestinon which is a supplement for the Myasthenia and Prednisone to suppress the immune system. I had ALL the cosmetic side effects from Prednisone, I started with 60 mg, then 40mg and mostly on 20mg for the remaining of the year. I had the numbness in my hands and since I was weaned out of Prednisone (after about a year) the symptoms disappeared. I started becoming symptomatic again about two months later and was placed on CellCept. That was a slow process but I am back to strong and near normal. I've been on it for two months and have started to develop some kind of allergy on my skin. I have yet to determine if this is a side effect from the CellCept. I guess they all got something. Only we are our best advocates, because the reality is that doctors can only "aim, point and shoot" and hopefully hit the target. Good luck and let's thank God for the blessing of still be around with our loved ones. Many people are no longer around to tell their story.

[Tashatime]

I was diagnosed with MG two years ago. At that time it was the ocular type. I had double vision. I started taking Mestinon for it and the symptoms corrected immediately. However about two months ago I started having trouble chewing, and talking. It has increased more and more and my neurologist tried to increase my dosage of mestinon which was not successful. I just started Predizone 10 mg yesterday, which has helped some, but I still struggle to talk for periods of time. It has been very difficult for me because I am a mental health counselor and supervise a counseling program, so all I do is talk all day. If I am not in session, I am on the phone. I feel myself not wanting to go anywhere, even with my husband and kids.

[liddyann]

Hang in there Tashatime...I have a mg friend who I call my "angel nurse." The first time I was hospitalized, I was put on a floor I really didn't need to be on, but it was the only bed available. She only works 3 days a week and I was her patient for those 3 days. She is a full-time RN with mg, lectures at the local community college, mother of 3, has her share of bad days, too...She told me I was going to be OK and this was not going to stop me!!

It was the best thing that could have happened, I was meant to meet her!! God placed her in my life. MG has slowed me down, but not stopped me.

Take care...

[Tashatime]

Thank you! I have started to feel better with the predizone. However, I have to take mestinon every 2 or 3 hours or else I can hardly talk. I will say I am getting out more, but still very hesitant, and I still struggle in some sessions with clients. Still doing a lot better than two weeks ago!!! Thanks for your supportive words.