I was diagnosed in January of this year after a thymectomy in November of 2011. (My neuro considers this a serious medical blunder!)

I'm on cellcept 250 mg twice a day
Mestinon 60 mg 3 times a day
and Mestinon Timespan 180 mg at night ( I believe I'm having adverse side effects of the Timespan and have started taking half the dose. Too soon to tell if I'm right or if MG is rearing it's ugly head.)

Larissa

Started on 60 of predisone May 2010 now down to 20
cellcept 2000 from Dec 2010 to Nov 2011
IVIG Dec 2010 to Jan 2011, started 3 days then to once a month to every 2 weeks to weekly
Imuran 200 a day started in Jan 2011 as cellcept was not working
I am seronegative so I had to talk my doctor into trying plasmaphersis as ivig was not doing much good, started plasmaphersis about 6 weeks ago, and wow... sure can tell a difference. they wanted me to do it weekly but I have talked them into every 2 weeks due to work.
mestinon 60 3-4 x a day
topral and lisoniprol
then in the mix I had kidney cancer surgery April 14 2011

I'm Carla and I have not yet been diagnosed with MG. At first I think the Dr.s didn't know what to think of me, but with you all behind me, and getting up the nerve to be assertive I think we are really close. I saw the Pulm. last wed.

tonight I use the little oximeter and then go to the Neuro. tomarrow. I really hope that they will see, with the symptoms and pictures and history that even though I was seronegative and the EM something test showed neg. that it doesn't meant that it is not. The symptoms have progressed, and I think they will be able to see.

Once I see the Nuerologist down where I live, in another week or so, I go back up to the NueroOpthomologist at the Moran center. Wow, you finally get a dr. on your side who knows you and they are alot more willing to really look at what can't be written on paper but can still be seen.

Wish me luck tomarrow! We need to get this buggy going. I am running out of steam more everyday. I would just think I was out of shape and run down had it not been for seeing all the others here that have the same senario. I hope tomarrow is the day, if not, soon. I want to hold this back in it's tracks.

Wow! What a mix. Says volumes about this disease.

Diagnosed first in 2008. Given Mestinon without much direction and told to deal with it. In fact that doc re-upped the script without even seeing me, so i quit taking it.

In the summer of 2011 - i wrecked my cute car and lost a good fried to cancer in the span of a week. Symptoms came on full force.

Confirmed diagnosis by a new and wonderful nuero in 9/2011 who had quite the fit to discover that I had never really been treated.

Now on imuran (200mg) since October, prednisone (30/0 alt days) tapering due to side effects (cataracts and curly hair - odd i know) and as i write I am on the fifth series of IVIG, my eyes are clearing already and I can actually hold up the paper and read it.

Never have had PLEX.

Hoping to run a half marathon again ....

Barb

my hair is curly now too
fun
Ann

Went to see my mum in Europe in 2002. It was very upsetting as she had a brain tumor. A few days later I developed symptoms and ended up with a full crisis. (prior to this time I was perfectly well).
Was in and out of a coma for 3 months.
Came back to Australia and started on Prendisone and Imuran 75 mg. Tapered the Prednisone to nil after a few months. Mestinon - I take 90 mg timespan every morning.
Being on Imuran ever since, I was down to 25 mg until I stopped a few days ago. I have been almost symptoms free for 10 years, although I am very aware I have Myasthenia (at times I can "feel " it in my face). Not sure what is going to happen now, seeing my neuro on Wednesday!

just to keep updated

thanks Ann

this is just what I was looking for thank you so much

MG seropositive diagnosis April 2008quick diagnosis due to same symptoms my father had when he was diagnosis.

Other conditions cardiomyopathy, asthma, sleep apnea and several other minor conditions.

Treatments
Numerous IVIG and Plasmapheresis
Thymectomy - March 2011 no measureable benefits yethowever recent SFEMG did show improvement from previous test

Medications
Pyridostismine 90 mg 3 times daily
Pyridostismine Timespan 180 mg 2 times daily
Presnisone 50 mg dailydosage has been up and down
Methotrexate 25 mg once weekly.replace Cellcept
Bactrim 800-160 tab 3 times weekly
Folic Acid
Numerous other meds for other conditions
Discontinued medsCellcept was replaced with Methotrexate

Current conditionunstabe MG with severe breathing problems. Recent diagnosis of cardiomyopthy. Respiratory problems has complicated treatments due to doctors trying to determine if breathing problems are due to either MG or cardiomyopthy or a combination of both. Had repeat Cardiac Echo today, waiting on test results tomorrow.

Bruce