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hi there, i work with the careplace team. i think careplace is awesome. i hope it will really help people to share, support eachother and learn. we can all use support and understanding and it is so important for all of us who have experienced difficulties to have a safe and informative forum in which to do so. thanks for visiting - it is really rewarding for all of us to see people reaching out to eachother - it is what careplace is all about.
Life is about health, family and friends, but sometimes its hard to keep focus on what is most important
congenital familial limb-girdle myasthenic syndrome.
I am 27 years old and I have had MG for almost seven years now. I am hoping that I can encourage others that are newley diagnosed or not.
I am 29 yo and I have MG since I was 13.I had a thymectomy in 1992.Now i’m on 15mg of prednisone and no mestinon.
I want to share my experience in fighting with this disease.
All the best!
Hello. Kitty invited me to this site, So I will try it out,
My hubby Sam has MG, was Dx, in 2001 . he is 71.
I have had Myasthenia Gravis for 3 years now. Mine is primarily in by eyes. I do suffer a great amount of fatigue.
I was diagnosed with M.G. in October, 2006, and I’m S/P thymectomy (with thymoma) November 25, 2006. I want to learn more about M.G., by connecting with people who have it or who have been affected by it. I’m in great need of support, and I hope that, too, I can offer support to others.
my husband dx with Mg
At the age of 37 I was diagnosed with MG in Spet 04 after finding a thymoma. The surgery went well but I went into MG crisis about three weeks post surgery. I spent 11 days in the ICU and was released. I was doing great for about 8 months but once again I had another MG crisis in Novemeber of 05. Now I have been back at work for a year and doing great!! I am a single mother of two and without the help of my wonderful family and friends I don’t think I would have made it past the second crisis.
I just want to find other people out there who have this condition and hear their stories of survival.
hi
Possible diagnosis.
I have had MG since 1998 and had many ups and downs and treatments. I have been on ssd and medicare for 6 years and my treatments are limited. I wish to taliked with people who have the same dilemmas as me with Mg. Thank You
I was diagnosed with MG 2 years ago. Had my thymus removed and felt better for a while but started going down hill last year. Last September I went on Prednisone and am currently being switched to Imuran. I just want to hear what other folks with MG are going through.
Hi,
My 20 year old daughter just got diagnosed with MG and I would like to hear from anyone who could tell me if they have had their Thymus removed and if it has helped or if they haven’t had it removed I guess and how they are doing? She does not have a growth on the Thymus and we do not know if she should have it removed so any information would be appreciated!
Thank you!!
I have it…
I was diagnosed with MG almost two years ago and had a thymectomy in March 2006. I’ve tried IVIG, plasmapharesis, and everyone of the immunosuppressant drugs, but my IBS has made my stomach not able to tolerate them, so I live with the symptoms. It’s completely changed my life since I can’t work anymore. I try to go to school part-time, but that exhausts me and my brain power just isn’t the same either. The heat is also one of my triggers, and I live in Arizona—not the best scenario, but there’s nothing we can really do about it right now, so all in all, I just try to deal with life on a daily basis although I do get depressed sometimes and severely depressed occasionally when life just seems too difficult—but no whining. I try to think positive, and I’ve been using self-hypnosis for many of my pain issues and that seems to help, so one day at a time. Thanks.
Hi I was diagnose with MG at age of 37 in 1997 and I had the Thymectomy in 1998,it did work for me now i am in remision since July of 2004,I feel great and I think anyone that is diagnose with MG should go for it as long they are young and strong and have a great neurologist too,I had it change twice and help me alot,good luck to you all and keep in touch and updates on your recuparation.