What!? I'm new to the whole MG thing..but I would think one positive blood test is all you need. I would go and get a second opinion for sure if I was you. I'm sure you are so frustrated...I'm sorry you are going through this!

This is my third opinion

if you are taking prednisone or any other immune suppressants the antibodies the blood tests are looking for will not show up on blood tests anymore.

Joe

A couple of points to remember regarding being seronegative while on any form of immunosuppressive medication. when we take imuran or other immune suppressants, we lose the ability to have have the MG antibodies measured in our blood. Basically immune suppressants bring the levels down below the measurement threshold of the blood tests, but not low enough to fully stop the disease process.

"Classification as seronegative MG should be reserved for nonimmunosuppressed patients with generalized MG who lack muscle AChR binding, AChR modulating, or MuSK antibodies at presentation and at follow-up of at least 12 months.

http://www.ncbi.nlm.nih.gov/pubmed/17654558

or

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3505488/#!po=78.5714

Even Mayo clinics webpage for physicians states that once immunosuppressive therapy starts, that the antibodies will no longer be detectable, but does not act as an indicator of disease activity as the results are masked by the meds we take.

Joe

The correlation between antibody levels and disease severity only exists in individuals and is not always predictive even then. Individuals who are seropositive may develop lower antibody levels as they improve. They may still be detectable even during asymptomatic periods and certainly during treatment including prednisone and immunosuppressants.

Mayo's paper was about seronegative myasthenia converting to seropositive which is important for an institution whose diagnosis of MG is so serologically based. They hesitate to diagnose MG in seronegative persons and one gathers from their reluctance to use immunosuppressants that might affect the tests, hesitate to treat those they believe might have MG until they convert. Those who do not may "not have MG."

That antibody levels might become undetectable with our drugs in the presence of improvement is possible, but one would expect the levels to rise with worsening symptoms as in bear's case rather than to fall.

I do not know of any studies that say the drugs alone can mask the test findings. If you know of any, Joe, that would help in this situation. The first neuromuscular specialist I saw wanted my tests done at Mayo, saying they were the most sensitive. Oxford now has more sensitive tests. All suggests that some labs are better than others at detecting antibodies. I suspect we have a false negative on the second test. b.

B I will have to find the link again, but on Mayos lab webpage for clinicians in regards to the AcHr test, they specifically call out that once immunosuppression treatment has started that the antibodies in many cases are no longer detectable resultig in a negative test and that this is not a sign of disease activity. My neuro pointed that article on Mayos website out to me in how troublesome the blood tests can be.

Joe

Thank you both very much my mind wants to read and understand this but I am very tired. I have just gotten back from eating dinner with my wife, mother and my brother all I can think about is rest. Sure wish all this would make sense sometimes and I understood it all. So many doctors and so many test and so many pills and you still have to try and get up every morning and go to work feeling bad. Then it takes months to see a Neurologist then after they tell you for 2 years that you have MG your third opinion tells you we are not sure the blood work was inconclusive so more test and we will see you in 3 months. I sure wish all of us here wasn't having to deal with this but since we are I am very glad to be with this group of people you all are a good bunch of people. Boy I wrote all this with one eye opened and didn't misspell nuttin.

No worries Bear...rest is best...


Bweeds, I found the section I was referencing before from Mayos Lab Website found at:

http://www.mayomedicallaboratories.com/test-catalog/Clinical+and+Interpretive/83369

"Cautions
Antibodies may disappear with immunosuppressant therapy; the neurological diagnosis is further confounded if steroid myopathy develops."


Joe

Thanks, Joe,
This is not referenced, but it certainly could be used. That I haven't found the studies to support it, certainly doesn't mean they are not out there. If any of us get enough rest and meds we can go looking for them :-) Like bear, I am reading and typing with one eye closed. b.

Good luck Bear, how frustrating and discouraging. Keep up the fight best of luck, we are all here for you. =)

Best of luck in getting some firm answers.