My husband was tested for Acetylcholine Receptor Binding Antibodies 14 yrs ago and was told he was NEGATIVE! Recently watched a youtube video of MGFA National Patient conference and Myasthenia Gravis expert Dr. Ali A Habib with the University of California at Irvine was asked the question about wether ANY antibodies in the bloodwork would be a positive for MG? The Dr. stated that the cut off point for a positive is so low, that basically YES, ANY antibodies in the blood should be considered POSITIVE for MG especially with symptoms. Dr. Habib also stated that the Laboratory used makes a difference in accuracy of results.
I began to research labs, even considered paying for repeat testing out of pocket but first I decided to take a look at my husbands original NEGATIVE test and discovered that the lab said he had
.30 nmol/L of binding antibodies. This lab states that greater than .50 nmol/L is positive for MG, but apparently todays knowledge is that NO AChR antibodies should be present in the bloodstream and anything higher than .05 nmol/L should be considered positive for MG. So as I see this, my husband SHOULD have been diagnosed with MG 14 years ago!? Am I crazy? This seems insane that Dr.’s and laboratories would be this ignorant 14 years ago but it appears to be the case?
Has anyone else been told they don’t have high enough antibodies to actually have a MG diagnosis? It makes some sense to try and gauge disease response to medications with these numbers but to have a laboratory say a test with antibodies well over .05 nmol/L is negative for MG seems mind boggling!?