I have four positive blood tests from different labs. I recently went to a new neuro for a second opinion on getting a thymectomy; my neuro won't do it and I want to do everything I can to get better. I went to the Head of the Dept at a very, very famous teaching hospital. Ivy League.

He said my blood tests didn't count because they weren't from the Mayo Clinic and that is the only lab he believes in. He did a single fiber EMG on the spot and it was normal. He said I don't have MG.

I've been in treatment for 2 1/2 years, hospitalized in crisis twice, and on IVIG every two weeks all this time. If I so much as miss IVIG I go into crisis. Mestinon helps me immensely, and I have all the hallmark symptoms of MG. My symptoms do not fit anything else, and I am a pretty severe case, though not the worst ever.

I was in shock! I asked him if the fact that I was on IVIG and had taken Mestinon would affect the EMG and he said no.

I went home and found several studies that showed both Mestinon and IVIG can cause a SFEMG to be normal, and I believe even the blood test too. (My Mayo test came back normal.)

I went back to my regular neuro, and he said I definitely have MG, or a form of it that hasn't been identified yet. End of story.

wow tracy - that is awful!!!!!! I just can't stand how close minded some providers can be! Wow!!!! Of course IVIG and mestinon would affect the results - if they improve your muscle function - the tests will therefor show improved muscle function - how someone can't grasp that concept, especially someone educated is beyond me! Mayo labs can be wrong just like any other labs- no one is perfect... and 4 other positive labs - wow.... I hope that didnt' affect your treatment plan ultimately - seeing that physician!!!

Tracy, I am so sorry you are getting the run around. I hope you continue to pursue the thymectomy. I am pushing the topic with my neuro in the next visit in 3 weeks.

I have read so many studies that it is the best chance of remission (30%) and that nearly everyone shows improvement. I am a single parent of a teenage daughter and feel I have to try for her sake. I will let you know how it goes.

kathie

Does thymectomy help people that are seronegative and do not show any abnormality of the thymus?

Not to my knowledge.

I read an article in the 11th annual myasthenia gravis and related disorder conference where they tested seonegative MGer by adding more rapsyn ( the substance that makes ACHR receptors cluster) and they found if they added rapsyn to the test, 60% of SNMG tested positive for ACHR antibodies. They theorized that these MGers had low affinity binding and the test was not sensitive enough. (reference below). They felt SNMGers fit the profile of ACHR positive MGers. Theoretically, this would make thymectomy beneficial to the SNMGer. I can get to the book below because it is in the University where I work. I have not found a free link to it.

book:June 2008
Volume 1132 Myasthenia Gravis and Related Disorders 11th International Conference
article: Myasthenia Gravis Seronegative for Acetylcholine Receptor Antibodies
Angela Vincent, Maria Isabel Leite, Maria Elena Farrugia, Saiju Jacob, Stuart Viegas, Hiro Shiraishi, Olivier Benveniste, B. Paul Morgan, David Hilton-Jones, John Newsom-Davis*, David Beeson, Nick Willcox
Article first published online: 28 JUN 2008, pg 84-92

I have read that it does, that some people have abnormalities that show up after the thymus is removed and biopsied, and during MRI it looked "normal". My neuro says seronegative means nothing, the symptoms are what counts.

Tracy, I had to read your post twice, and skim it again. While I am not a doctor of medicine, I can say with confidence that the majority in my region who present with clinical symptoms, and a positive blood test would not only be likely to get a diagnosis but would be on the list for a thymectomy. I can also say with confidence that it's unlikely that a person without a diagnosis, would get IVIG either, unless it's critical or the doctor is iffy.

You have a neuro who diagnosed you, but he won't do a thymectomy?

Did anyone look at your chest, either by x-ray or MRI?

I'm just not getting this...

To add to my confusion, Mayo Medical Labs report the lowest positive values at
< or =0.02 nmol/L. As well, there is the following caution: "...Antibodies may disappear with immunosuppressant therapy..."

I was not present to hear your discussion with the doctor, however, I'm shrugging my shoulders...

Fortunatos, can you give me a link to the quote by Mayo about immunosupression and the test results. I need a copy of this for my neurologist, it is a very important point as I have been immounosupressed when I took the blood test and had negative results while taking Imuran for 3 years.

Thanks

Joe