I have tried to research this question and havent come up with anything specific recently. I think I may have some time ago but may be wrong. It only makes sense to me that someone could show antibodies a year or 2 later. I was tested in early 08 and it was negative for the standard and the musk. A reputible lab was used. I went to Mayo in the winter of that year and they only did one of the tests and it was negative. Dont understand what their thinking was around not doing the 2nd test tho the lab sheet seemed to indicate a lab problem out of their hands.

So my daughter pressed for new blood tests so I can get further confirmation after my eyes tested positve in May this year. My neuro told her yes by phone so we were darn sure we were there yet she pulled the plug and said no.

I see that some here have had tests change because of medications or labs affecting tests. I do not believe that impacted mine. I did ask my neuro if the hyperparathyroidism could impact test and she said no.

Annie59

Annie, The short answer is "yes," they do change.

Someone can get an autoimmune disease slowly or quickly or anywhere in between. The more severe cases of MG have high antibody titers and may be clinically severe right away. Ocular only MG patients may not have a positive antibody test right away. It is highly variable.

Here are some articles for you to read:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1028609/

http://www.mayomedicallaboratories.c...erpretive/8338

http://www.cmj.org/periodical/PaperL...17581751205552

http://neuromuscular.wustl.edu/mtime/mgdx.html

Do you have the actual lab sheet from Mayo? I'm asking because they DO NOT only do the AChR binding test. It is always done along with the AChR modulating test. The AChR panel has binding, modulating and blocking. Blocking is not always done. If the MuSK had already been done, I doubt they would redo it at Mayo. There is only one lab in the country who has "permission" to do the MuSK test so far (they have proprietary rights). So Mayo would've had to send the blood out to be checked.

You can have your internist redo the AChR antibody panel and send it off to Mayo. Any doctor can order that test.

You can always get a 2nd opinion from another internist or neuro. It can be helpful but it can hurt too. Patients who see too many specialists can be seen as "doctor shoppers" or "doctor hoppers" that want a doctor to confirm something that doesn't really exist. And, no, I'm not saying that is the case with you! I'm simply pointing out how doctors think about this stuff.

I hope you can get some answers as to what is going on.

Mine changed. I had two positives at Mayo in 1/09, 1 negative at ARUP labs in 11/09 and another negative at an unknown lab in 3/10. I have something strange going on though because my symptom pattern is like that of a Musk patient though I test positive for the AchR binding antibodies (and the titer on that was low). Notice also that my pattern was backwards: my first tests were positive and subsequent ones were negative. Thanks to the good advice of this board I didn't take mestinon or anything else that could affect the tests.

Just my opinion: I think they say they know a lot about this disease and I think they actually know very little. And I think there are a lot of people out there who have the disease but don't fit a typical pattern and so don't get treated.

Also, I've had two negative and one positive single fiber emg. That test, though, I really believe is completely dependent on the experience and skill of the neuro who is doing the test. The first neuro was well meaning but inexperienced, the second neuro was a moron, the third was a brilliant guy who had been doing the test for decades.

A.

Yes AnnieB3 Mayo did the 3 tests you noted (blinding...and so on). I do have the lab sheet. When I discussed this neuro recently with one of the MG Assoc heads she said it did sound like she didnt know much about MG. TO not turn off other docs but to get to a different doc I have said that I am sure she is good at neuromuscular issues of other sorts but I dont think MG is one she is very familiar with. When I showed my top notch internist the record from the eye doc that diagnosed my eyes with MG in May she agreed to refer me to someone else. My neuro virtually ignored it. This eye doc was from a special eye disorder clinic not just a doc in box.

So I see this new neuro on Nov 2nd. My internist and pulmonogist are very on board. My pulmonologist called to assure me he gets how sick I am and had come up with additional tests to do to be sure it get sorted out with no more delay. I have been in contact with him more this last few months as my breathing has been alot worse. I am hopeful........but I realize today I have become numb trying to deal with more intense level of illness.

Annie59