Myasthenia Gravis Support Group

hi, i was diagnosed in april of 2009. to say the least my life has changed dramatically. i was an icu nurse for 20 years then one day i developed double vision and one of my eyelids was drooping. i had all of the tests done, the lab work never came back positive, i was sent to a neurologist in memphis, tennessee and he did and emg and said that i did have mg. i was put on mestinon and prednisone first and every muscle in my body started cramping and had to go off of the mesinon, but continued on prednisone. double vision went away after 2 weeks and i went back to work for 1 month and the double vision came back. i haven't worked since. from everything that i have read this is not very common for someone in their 50's to be diagnosed. is this correct? also the muscle fatigue is really bad. they started me on imuran in july 2009 and i take 200mg a day and am now off of steroids since feb.

any input that anyone can give me will be much appreciated. i am in the mda clinic in memphis so i am under physicians care, just wanted some information from other people that have this as well.

thanks

hello!

thanks for the post and i hope that you are doing well. this is a great forum, very active! so if you have any questions, please feel free to post - people usually are very honest and i have learned a lot from their experiences.

leah

thanks so much for replying. it's that you feel like you are so alone

with this and it's good to see what others have to say.

sandie

I was diagnosed in February of this year at the age of 64---so I'd say your age doesn't matter. It's all just statistics. I've come back from a week in the hospital in March and a near Thymectomy (I was saved by the biopsy)to working a full time job. I can't imagine I'd be able to work without Mestinon. I take that in combination with Prednisone. I still have problems with speech and swallowing but I can climb stairs again and dry my hair standing up!

On a positive note, there is a drug that is still in the testing phase that could save us all. Go on-line and check out Monarsen. I found the best summary of this drug on "The Garden State Chapter of the Myasthenia Gravis Foundation."

Cheers!

Sandie

thanks so much i will check that out

Thought you also might be interested in exploring other support groups. You might find www.dailystrengtth.org helpful. I'm also signed up on a site in the UK www.mga.superbuilder.net because I'm trying to track down the group that did the Monarsen study. So far I'm having trouble with the UK site. I can't figure out how to post a message! Cheers! Sandie

thanks for the info this is so strange my name is sandra but i like to be called sandie and i spell it the same way that you do. what are the chances of that ever happening again.

My real name is Sondra but I've gone by Sandie since elementary school!

I'll check in with you next week. I don't have a computer at home---I use the one at work!

Cheers!

Sandie

I was diagnosed with MG when I was 39 back in 2008. I'm now 41. I think they say this startsn hitting women in thier 40's and on. It also affects dogs not to sure about other animals

I don't have a classic case of MG, they are still after 2 yrs along with the Mayo clinic I'm from canada are trying to figure out what antibody is causing my MG. I know my thyroid is fine and removing it would have done nothing.

I was actually will say at this point a year later that I was controlled using methloprednosone. 1000 mg/day for 5 days straight. I have been symptom free now since las july but was still taking Mestinon and prednisone up until February of this year. 2010.

I had spinal sugery on July 7th, 2010 where they used oxycontin and that brought on my MG symptoms. I took 2 doses of mestinon 5 hrs apart and stopped using oxycontin and they symptoms disappeared.

I truley didn't think that Mestinon ever worked while I was on it for 2 yrs. But after the results I saw a couple of days ago I'm sure it was what helped me throught it. So if you don't think it working believe me it is working. You just don't see the results until you have to rely on it to fix your symptoms. So don't stop taking it until your doctor tells you to stop taking it.

I hope your doing well and that you find relief soon from the Symptoms of MG. I honestly can't give you any advise except that to take the meds your doctor is giving you. You will know what ones you need to sto taking as your body will let you know. being a nusrse I'm sure you know what I'm talking about.

Good Luck and hope yo get well soon

thank you so much. i'm so glad to hear that your mg is better. this is all so very scary because of the unknown. i have not tested positive for any of the antigens so far, but it just seems that i got so weak so quickly. then my family and i think back about how tired i had been getting, then in feb 09, i have asthma was diagnosed at 21, i had a really bad asthma attack the worst i had ever had. before i had always responded to medications immediately, but that time it took breathing treatments every 4 hours at home, prednisone, antibiotics and sometimes chest precussion just to get me through it. it lasted for over 2 weeks. my family and i have wondered if the mg was just trying to start then since i didn't respond to therapy like i usually did. just a thought.