I was just diagnosed on November 11, 2008 with generalized myasthenia gravis. I am a 36 year old mother of three kiddies ages 8, 4 and 2. I have been sick since August 2007 and was starting to think that they would never figure out what was wrong with me.

My neurologist put me on Mestinon and Azathioprine. I have only been on the meds for two weeks. I have noticed alot of improvement in my eyelids and my walking. I was expecting to have my symptoms go away, how naive! I had my flu shot yesterday because I get it every year and am now fearful of getting the flu and going into "crisis". I have never had a crisis before.

I am trying to get as much information about this disease and all that goes along with it. I am being referred to a surgeon to discuss the thymectomy.
Can anyone tell me when it gets better? ~ Melanie

It will take a while, but you will feel better soon! Hang in there!

I am still a newbie, but was diagnosed on March 6th and had my thymus removed on April 22nd. By the time I had left the hospital, my antibody levels had already gone down (they were @ 600).........

You will have good days/weeks, and bad ones. The most important thing to remember is to not overdo it! Rest when you can and try and stay hydrated (for me that means chewing on ice chips all day long).........

It has been my experience that a crisis doesn't come out of the blue - they build up until you have one. I have had a crisis and it made me go to the ICU for a while, but once there I was given lots of meds and that made me feel awesome!!!!!

There are lots of very knowledgeable people on this site that can offer a mot more info than I can. Hopefully they will answer soon!!!

I'd love to hear more about you when you have some time and the energy to do so!!!

Erin

Hi Melanie,

You must be so relieved to have a diagnosis!I know how hard it is when you don't feel well and can't understand why! I wish I could tell you exactly how long until you'll feel better - but MG is such a funny thing. When I was first diagnosed I went for years just taking Mestinon every four hours and feeling fairly "normal." THEN about 2 years ago I started to get worse for no apparent reason. Last Christmas was terrible - I'm a very positive person, but I was actually depressed. I couldn't walk up my stairs, dress myself, even get in the tub on my own. My doctor started my on pred and azathioprine and things have been improving. Now my new "cocktail" of medications seems to be working and I've been really healthy again. Of course I still have to be very aware of my limitations, but I can go grocery shopping on my own again, etc etc. It took about 6 months for my Azathioprine to start working, so be patient with that drug. Steriods are amazing for the good they do, but the side effects are horrendous. I'm currently taking 40mg every second day and would like to reduce them futher but I'm scared I'll end up back where I was a year ago!

I've had my flu shot too - better safe than sorry! My husband had the flu and he was off work for almost 2 full weeks - and he NEVER gets ill! I'm so glad I escaped it. I'm also going back next week for a pnemonia vaccine.

Don't worry about a crisis - I think keeping a positive attitude goes a long way. I've been lucky that the only crisis I've experienced was in the hospital and was induced by anesthetic I had been given for an operation. Lots of people have MG and never experience a crisis. My only word of advice would be to educate your kids and family that if anything were to ever happen they could tell people "mommy has MG" Or carry a bit of paper in your purse/have something posted by your door that they know to give to someone in case of emergency. This should list all your current meds and doses. I wear a medic alert bracelet, but I've never needed it. That's more as a precaution than anything else I guess. A sort of worst case scenario!

Anyways, blah blah blah - I've been rambling. Sorry. Have a great day. Good luck with everything.
~Kathy

hi everyone i totally understand how you all feel. im 16 and i was always a fit healthy phsyical person, i did netball and swimming and then it seems like pone day i started feeling constantly weak, i couldnt go my gcses properly or to my full potential, i then droped out of college because i just could not manage it! i was undiagnosis fo nearly 2 years, however i was diagonised on the 6th of november 08. and i to am waiting for the medcines to perform MAGIC! i take 50mg of preisolone, 1500mg of calcium and vitamin d, and 60mg of Mestinon. these dosages have been incresed over the last 3 weeks and I am being referred to a surgeon to discuss the thymectomy.
i was recommended to start a non-diary and raw food diet, has anyone else found these ajustments work? i also wanted to start light swimming again i was wondering if anyone else knows of any other good excercises?
thanks xx