Accuracy of Antibody Tests
 

Does anyone know whether or not the accuracy of the antibody tests is reliable?

Seems to me that if the tests were not very reliable then that might explain why so many of us are testing negative.

All of my tests were sent to Mayo and think their results are pretty accurate.
Mike

A Thought for Mike
 

I am sorry to hear your symptoms are so bad and you are getting worse.

I think no matter how great our doctors may or may not be, ultimately patients with complicated and rare illnesses have to be proactive advocates if our circumstances do not fit in the square peg of average patients.

I think you said you dont seem to get relief from mestinon (which is surprising to me - it hasnt cured me but there is absolutely 100% no doubt it helps a lot) If you go to the link I posted in this forum and start reading through, it is pretty sophisticated in terms of cross referencing similar illnesses/symptoms/tests etc. It illustrated to me just how sensitive (unreliable) EMG is and most importantly it links to other neuromuscular illnesses that may be similar to MG.

I learned long ago that sometimes it helps to re-read complicated information in order to really digest it. For ex., I had seen on different ocassions in last month at least 3 websites with info about drugs that exacerbate MG but it wasnt until I started playing and reading on this website that I realized I had taken one of those drugs (Z-pac) in late March of this year (and my symptoms have gotten really really bad in past 4 months).

Good luck, hope you get some relief soon.

PS that said, I assume the info on website it accurate, not like I could really verify it anyway but I had to put that disclaimer in
Stephanie

http://neuromuscular.wustl.edu/synmg.html

this is the link

My wife is my doctor. She goes to all my Dr visits and keeps them straight. My GP prescribed some antibiotics for me and she told him not no but he** no. He argued with her and she told him to look it up. She was right. I was in the hospital and the nurse tried to give me 3 60mg for my 180mg time release mestinon. Again my wife said he is not taking that. They didn't have the 180 so my wife went home and got mine.
We have learned that all these high paid doctors don't really know that much about this disease. I do see a neuromuscular dr who was on the team that actually discovered the antibodies. He is very smart and his exams are the most through I have had. But his bed side manner is the worst I have ever seen. I don't mind seeing him now that I know what to expect. He was the one that discovered Prednisone was destroying the muscles in my legs.
This is a long hard journey but we will whip this thing
Mike

I only know about the Musk and the Acetylcholine receptor tests. Are there other antibody tests that can be ordered? Where can they be sent?

I highly suspect that my neurologist hasn't seen a lot of MG.

On my Mayo bloodwork I was positive for binding, modulating which is part of the normal panel. Also in the same mayo report was a positive for striational muscle. Also positive for calcium channel antibodies but not sure mayo did that one.
When I see this neuromuscular dr. he usually takes 12-15 vials of blood for testing.
Mike

Your wife is pure gold, man....without her, one of those "health care professionals" could have done you in by now! Knowledge is power. Kudos to your fantastic wife. Mark

My consultant at Oxford said that she doesn't consider most antibody tests to be "sensitive enough" to pick up the antibodies

As far as accuracy of the tests, if they are positive, then that should mean that you have MG. Positive is a very significant finding.

If they are negative, it doesn't mean a whole lot apparently.