Myasthenia Gravis Support Group

Any good diagnosticians at U of A? I know they have lots of "big" names. Good luck. Sarah

Have the blood work sent to Mayo Clinic. They are the BEST and many others come back neg by mistake. It can take up to 2 weeks but it is worth it to get the correct diagnosis. Then you can go from there. It sure sounds like MG to me.
Also, find the doctor in charge of the Muscular Distrophy Assoc. clinic in your area. It may be in the largest city near you but is worth the traveling. I drive to Georgetown in DC about 2 hours away for my doctor visits. It is well worth it.
Best to you.

ok,,, I am back again>>>>>>>>
I have had no luck what so ever with a diagnosis. The MG antibody test was Neg. they also did MUSK antibody test which was neg. I am having another bout with the weakness in the arms and legs (of course it is 112 outside). I finally became frustrated and decided to get ahold of some mestinone to see if it would work. It does seam to help with the weakness a little bit but my left eye twitches allot when I take it. That is the same eye that was twitching before but the mestinone appears to make it worse. I am just about ready to just go to mayo clinic to have them run the gamete. It is so frustrating to know that you have something and yet you don't know what.

So sorry to hear that you are still struggling. Probably good you went ahead and tried the mestinon as the eye twitching while on it may be another "clue" for the docs. It definitely is something. Lets us know what Mayo finds. Best thoughts to you. Sarah

Greetings!
It sounds like you are having a really hard time! Know that alot of us pulling for you!

As far as the negative blood test,my daughter has never tested postitive for any of the antibodies and her neuro Dr Praful Kelkar, says that the antibody test that would be positive for the MG that Natalie has , has not been invented yet....He says the MUSK test has just been around for 4-5 years.

If you are considering going to the Mayo Clinic, we were told that it would take a long time to get an appointment, because while you consider it very urgent to get in that they do not consider the possibility of MG an emergency....

We would STRONGLY recommend Dr.Kelkar who happens to be at the Noran Neuro Clinic being in Minneapolis.....Dr. Kelkar has just left the position of the Dept Head of Neuromuscular Diseases at the University of Iowa, within the last 2 years to go into private practice.

We travel about 8 hours one way to take Natalie to see him about every 5-6 months and she is also followed by Dr Swenson at the University of Iowa every 2-3 months, Dr Swenson trained under Dr Kelkar and they have very good communication between them for Natalie's best interest.

You can google Dr Kelkar or the Noran Neruo Clinic to get more information.

Who ever you happen to see, I hope they are someone you trust and respect..that is vital to your health...remember that the MG is so rare that many neuros never see a MG patient in their practice....so very important for YOU to know that THEY know about MG, and not just dismiss you!...Sarah100 is 100% correct ...MG is a weird disease with not only the signs and symptoms differing from patient to patient, but from day to day and sometimes hour to our!

Do take care keep us posted and try to be positive....and I TRULY know how very, very hard that can be to do!!

Take care!
Sandy

my EMG confirmed mine..i have very tiered eyes but i have never had any eye drooping just extreme pain in legs and arms and tops of my hands..i realy got scared when the legs stopped working on a bike ride and i could not get up!! i am on Mestinin 60 mg 1/2 pill in the am and 1/2 pill in the afternoon first 2 weeks it seemed to work but know it seems like it makes it worse..
we will see on thw 18th whats next!!

No the trouble sleeping is part of mg also if you have thyroid problems. I am tired when i wake up.

id14526, i dont think it is a good idea to just get meds and try them on your own. That can harm you and screw up your test results. maybe u have fibromyaliaga. also negative antibody tests can be incorrect.

I too, was diagnosed after an EMG...All blood tests were negative..Don't be deterred, you will be diagnosed...