:confused: I can appreciate that a neurologist needs data, the results of which, can go either way, but, I'm thinking, "Uh...you're the neuro, so get some! ..."

MG is cruel enough without the fight for diagnosis...let alone having a diagnosis and then having it removed!! It's about time the Neuro's all got together and decided which tests/results/symptoms determine a diagnosis of MG, collectively agree on it and than started actually trying to help people instead of the constant focus on disproving it! Why are we left jumping from Neuro to Neuro when surely they should all be educated to the same standard - its a shame the "Box Ticking" is more important than looking at the individual! We all know none of the tests are 100% so while they wait to develop one that is, they should acknowledge that there are people who will have MG who won't show up on every test (or, in some cases, any tests!) grow some balls and at least try to help to give those people their life back!!

I really hope you find a Neuro with some common sense and compassion and they help you to get back to feeling somewhere near yourself - Good Luck.:hug:

It seems to me that the younger doctors don't really know how to do physical exams. If my primary care physician did an exam like he does on me (very brief and incomplete), he would flunk out of nursing school. I use him because he is better than people I have had recently. My neuro is an older man and he actually can diagnose things while actually including physical findings of the patient. I had a PCP before that was very thorough, but he retired.

Hello Quandry
 

I am so sorry to hear that the neurologist is letting you down. You need to find a new one. Not all doctors are equil in regards to DX. You know your body better than anyone else. You know there is something wrong. Don't stop fighting for your quality of life. A new neurologist may help. Post where you live near, and maybe someone in the area on NT could tell you of a physician that could help you. You will find support here. ginnie

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