Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
You are "negative" only for the antibodies that they know about, and are currently testing for. There are "new" antibodies on the horizon that they are experimenting with, and some day will test us myasthenics for those as well.
I think in the next decade or so, their will be fewer and fewer "sero-negatives" like us. Which is a good thing, because I know for some it only complicates things with insurance companies, disability, and a few bone-headed physicians who don't "believe" unless the labs confirm it.
Take Care.
I tested positive for the AChR antibodies. "Off the scale".
Not that - that - means anything. Antibodies are antibodies - period.
Yet because I passed theEMG (nerve-conduction) tests? The Neuro conducting those tests? Told me - I did not have MG.
Told me I was crazy - and immediately started to schedule me - for a neuro-psychiatry appt!
I hope you can find an MD who will take you seriously.
So sorry.
Carly
There are people with MG who are negative on the antibodies and positve on the EMG tests. There are people with MG who are positive on the antibody test but negative on the EMG tests. There are some who have MG who are positivie on both and some who have EMG who are negative on both.
It is thought that not all the antibodies have been discovered as yet and also that tests may not be sensitive enough for some. THere are many reasons why tests are sometimes negative including how they are given. More research needs to be done in areas like how autonomic dysfunction can effect the neuro junction.
Some here have all the symptoms and have had a very positive reaction to mestinon. Others have responded well to IGIIV. It is sometimes very very difficult to find a doctor who is receptive to the fact that you can have something that is not the standard text book case.
Some have done better with muscular specialists from the Multiple Sclerosis research clinics. Others have found neurologists who are specialists in MG and understand seronegative MG. Some have found primary care doctors who get this. Remember a test does not always rule out a disease. There are people with seronegative RA and others who have seronegative MG.
Also there are familial types of MG that do not have antibodies.
It has taken for many here searching for someone who can pin down diagnoses by stepping outside the proverbial box. As frustrating as all this is....hang in there. Persistence and the willingness to search for someone who is actually helpful can take a while.
Will send you a big hug and hoping you are able to find some answers soon. Unfortunately it can take a while to find diagnoses.
I want one of those devices on Star Trek they can just wave over me and come up with the dx! Hugs, Marie