Myasthenia Gravis Support Group

My daughter had this surgery in April, 2008, about 2 months after she was diagnosed. I believe she would have died without it. During that 8 weeks she deteriorated from playing competitive volleyball to being bedridden. Her gland was about 2 and 1/2 times heavier than it should have been. She did improve a lot after the surgery. Most of the time she goes to high school and sometimes can go out with friends. (She has good days and bad.) No remission though. Her antibody level is 69% now. Thanks. Sarah

Hi there!!!
I had my Thymectomy about 7 years ago also.....no tumor, they justed wanted to remove it because they believed it helps MG. Well, after I had it, I got WORSE....couldn't see, bear weight, walk and etc. but slowly I got better. I guess deep down I wanted a remission SO bad and all I have EVER wanted is to be like others and have a drug-free remission also!! But, that had never happened for me. I have had IVIG treatments, on numerous meds and so on!!
BUT.....one of my problems is I am a very High anxiety person and that is one of my problems, everytime something didn't "feel right" I panicked....because I was scared and thought "Oh my WHY ME, My kids NEED me!!"
To make my story shorter ( cause I could go on forever...haha ) The one thing my neuro told me is that my MG is under-control, but all the stress in my life is what makes it flare.....and honey I have A LOT of Stress!!!!
Somedays I think I am on more pills then your local pharmacy, and I don't even need to look at a clock to know the time it is to take my next med, it's like my body already knows!! Heck, My family will look at me taking a pill and say " Wow is it noon already?" LOL
So I guess, I would say that I did not see any great improvements, but I am glad that I had it done!!
I hope this helps a little and makes sense?!
Kim :)

Sarah, I have a question for you! How is it that they re-tested her antibody level's? I was told years ago that they don't do that becasue once diagnosed you will always have it and they do not need to re-test?
I would LOVE to be re-tested and compare my old results!!!!

Thanks,
Kim

I thank u all for responding .. so far.. I didn't mentioned that once my thymus gland was removed and sent off to the lab then they realized that under the fatty tissue that was on it lied a small tumore luckily they removed it... but I really didnt feel any positive changes and I would also love to know how you went about getting her antibody level checked again. I think the last time mine were checked I was a child. I was diagnoised at age 2 1/2 years old so that is more than likely the last time it was checked... I'll be looking forward to your answer...

Tootles :)

To check the levels they do a blood test to test for the acetylcholine receptor antibodies. Most neurologists should know about this test. Just tell them you want it done next time you go in. My husband has had his tested a number of times over the past two years to find out if any of the meds are making a difference in the "titer"(?sp) levels.
Here's a site with some info:
http://www.netwellness.org/questio...

Thanks a lot dfreysd, I will most definitely asking my doctor about this next time I go and see him...

smooches :)

Hi all! I believe the doc retested my daughter's antibody levels because he thought they would be low or nonexistent- but they were high. Now, he says the high level is irrelevant. I don't think it should be a big deal as it's just a simple blood test. I would be curious to hear what levels everyone has- just for comparison purposes. Kimmer- Are you on meds for your anxiety? Anxiety runs in our family and my son was diagnosed with generalized anxiety disorder when he was only 5. It was interfering with so much of his life! We tried to keep him off meds but had to try something by the time he was 8. He went on Luvox and the change was enormous. It might be worth a try. Thanks. Sarah

My antibody count, when i tested it earlier this year, was 11.35 nM/L. The doc told me that was high but also mentioned that it varies day to day.