Myasthenia Gravis

[gypsyrsele]

I was diagnosed with MG almost 3 years ago. I have been taking mestinon, cellcept and prednisone since then. My symptoms are gradually getting worse and the meds only give a a 3 to 5 hour window a day. Meaning, that's how long I have to eat and function in my daily routine. I have had 3 major falls over the course of one month and several minor ones. Should I get a second opinion on my disease or is this common?

[6thCranialNerve]

I have  been treated for Myasthenia Gravis for about a year. I started out taking Mestinon (pyridostigmine), Cellcept (mycophenolate mofetil) & Immune Globulin Infusions (IVIG). My neurologist had me stop taking the Mestinon because he said at some point that drug would make my symptoms worse. I had taken prednisone when I had cancer and could not take it without having horrible side effects. Personally, I do not like long term treatment with steroids when there are other drugs available. I had been having a lot of back pain; like I had a slipped disk. My neurologist had been giving me an epidural steroid injection every visit. I had remembered a drug called Baclofen and asked to try it. It has been a miracle drug for the pain I have associated with my MG. I realize everyone is different; but wanted to share. Pain is usually not a hallmark with MG; but people do have pain with it. It should be addressed with your neurologist and your neurologist should give your complaint thoughtful concern.

[mamajanie]

husband started with eye problems 3 years ago could not get diag...stacked vision...dripping eyelud 1 year ago..mfalling..diff. chewing swallowing breathing...does have sleep apnea...2weeks icu....ivig caused end stage renal failure..now diag. with Chf....CANNOT GET HOLD OF DEBILITATING BODY CRAMPS....MEDS ARE...MESTINON..CELLCEPT...COREG...PRED...SENSIPAR...MANY OTHERS

[Abhijeet Deshmukh, MD]

Hello.

The medicines that you are taking may not work for a long time. They lose their effectiveness after some time. This looks to be the case here.

In such a situation, a thymectomy is considered. Do you have a thymus tumor ?

Regards

[6thCranialNerve]

You need to add Immune Globulin which is either an intravenous infusion or you can administer it to yourself sub-cutaneously. Your neurologist should have already tried this. You may need to find another provider. You should have already had a CT scan of your chest to rule out enlarged Thymus. Some schools of thought say a thymectomy should always be performed. I have MG and I don't think I would want a thymectomy unless medically necessary.