I Have Myesthenia Gravis And Fibromyalgia

I was diagnosed with fibromyalgia 2 1/2 years ago. I tried every Rx and natural stuff to get in under control but had no luck with that..then 2 years ago i had trouble swallowing. i had every test they could do to see what was wrong. All the specialists could say was that my muscles only worked about 30% of the time and they could not give a reason....my speech started to be very thick and my husband had trouble understanding me. The specialists could not see a reason for this...than i went for my yearly eye exam..the opthamologist saw that my left eye was 1/2 closed..that had started a week before the appt...He sent me to an eye specialist and they did the ice on the eye test and sure enough i had myesthenia gravis. Then all the drs got together and figured out this was one of my autoimmune diseases.
The progression of the disease was very fast. I had IGIV for 6 months with no help at all except it made me sick. I had every blood test and everything came out negative. All the EEG and nerve conduction tests showed muscle weakness. I went to USF to see if they could come up with a different treatment. I was put on Imuran but my blood levels dropped to critical within 3 weeks so that was stopped...I was put on prednisone and gained 15 lbs in 2 months with no great relief.
In the meantime the fibromyalgia was in a flairup. I was put on every Rx the rheumatologist could find and finally Lyrica helped, but the side affect was another 15 lbs in 6 weeks..
I am now on Cellcept for the MG and I have some good hours some days but I still have not had a complete "good day"..I have to rest every afternoon so that I can make it through dinner without choking on my food...I am now suffering from "weepy days" where the tears just come and I have no control over them.
I have never been a depressed person but now I know how other people who suffer from this feel..it is no fun..
Does anyone have any more suggestions to help get this MG into remission. Any suggestions would be appreciated. Thanks and God bless all who suffer !!
cgh49 cgh49
61-65, F
2 Responses Sep 7, 2012

I'm on Cellcept but also taking Mestinon. It has helped me a lot. Good Luck n God Bless.

I have MG & fibro. Aren't we lucky? Has anyone discussed your having a thymectomy? Google MG & thymectomy to understand what I'm talking about. I had the surgery last month and am still recovering. It's major surgery, but worth the chance of remission!

I did have a thymectomy n feeling better. I have my good days but I have body ache all over!