How many times have you tested positive for AChR Modulating Antibodies? What's the number?

I am a modulating only MGer. There are, according to REAL experts, approx. 4% or more of us; though I'll bet it's far more than that. It's a different type of process of destruction in the neuromuscular junction than the binding antibodies. Both are destructive and cause MG.

Perhaps your doctors would like to call up Dr. Matthew N. Meriggioli (University of Illinois), Dr. James F. Howard, Jr. (University of North Carolina, Chapel Hill) and Dr. C Michel Harper (Mayo Clinic, Rochester) and tell them that they don't know squat about this topic or MG? If they do, they can refer to pages 91 - 92 and page 114 of their book "Neuromuscular Junction Disorders: Diagnosis and Treatment" when they tell them they are wrong and your doctors are "right." Maybe you could copy those pages and send it to your idiot neuros and the medical board of your state.

Or can't they "convert" knowledge into practice? Now that's a conversion disorder.

How about a trip down to North Carolina to see Dr. Howard? It might take awhile to get in but I doubt he would pooh-pooh modulating antibodies. He is a very NICE neurologist. He would not treat a patient the way you have been treated. I've seen him twice, so this is not conjecture.

This is unreal. I can hardly deal with the way MGers are treated anymore.

You just regroup your records, your thoughts and then take some action.

It's your life. We patients have RIGHTS. And these doctors are denying you treatment. And it's malpractice.

Hang in there. You're not nuts. You're sick and need help.


Annie

Only one of many sites out there.

http://www.aruplab.com/guides/ug/tests/0099521.jsp

Here's another explanation.

http://www.netwellness.org/question.cfm/36402.htm