I never had that test. I was tested for acetlycholine receptor antibodies. Have you had that test? My neuro is in Boston @Boston Medical Center and she's great if you are looking for another opinion. Hope this helps.

I did have that test, and it was negative. I was told that 10-15% of people with MG test negative, so its not conclusive unless its positive. So now I have to have a single nerve EMG. Very frustrating. Thank you for your reply. I see someone in Boston at St. Elizabeth, Mark Weinard. He;s a neuro specializing in MG, and supposed to have quite a reputation. I will see how it goes, and may want another opinion, so thank you. My Rheumatologist for Lupus and Sjogrens is at Beth Israel, and my eye doctor for the double vision and Sjogrens is at Mass Eye and Ear, so I go to Boston for everything. I guess we are very lucky we are so close, when people travel from all over to see our doctors here.
thank you,

I am new to this group, but not new to MG. I have had MG for 8yrs now. It took me apx 2.5yrs to get an official dx. I knew from my career as a hospital based Speech Language Pathologist, that I had all the sx's of MG! It took way too many doc of all types to tell me I was wrong before I was finally proven right at the Cleveland Clinic. Bittersweet vindication to say the least!!
I am seronegative and most of the people I know with MG are...so that 10-15% number they throw out in the data seems to be way off of reality. All that said....here is what I have to share: I did not have a tensilon test @ cleveland clinic as the MD's felt the single fiber emg was safer overall. They did not say the tensilon test was inaccurate, just that they would do a SF EMG afterwards anyways. So...I had that done. I failed the test miserably. 5 of 6 nerve pathways controling the function of my eyes were shot totally. The Head of Neurology at Cleveland did the test that day. He did not want to tell me the results as they were still looking at EXTENSIVE bloodwork that was done on me. What he did say made me feel for the first time that I was not crazy! "the test was NOT normal Christy...you failed...there is a real problem here...it is not all in your head as other have told you over and over again" He gave me a hug and said that my primary neuro would let me know the next steps the following day. The next morning I met with my doc and he said that it really looked like MG, but due to one blood test they wanted to rule out Mitochondrial Myopathy. So he asked me to return in a week to have a muscle biposy done. It was no big deal....given everything I had been through I just wanted to KNOW! They had a world renowned Pathologist who worked at the VA in Cleveland come to the OR and take part of the muscle for a "Fresh Tissue" study and the rest was prepped for a frozen tissue study. At the end of all that....the other disease was ruled out and MG officially dx'ed.
It is an emotional roller coaster I know! Just do the best you can...allow yourself the dignity of feeling what you feel. When I woke up in the morning feeling really upset about it all, I made a deal with myself. I went to the microwave in the kitchen and set the timer to 20 mimnutes. For that period of time I let myself have my very own pity party...I cried like crazy, screamed, yelled, cursed, threw things...what I felt like. When the timer went off, I tried to let it go for the day. Not everyday was I able to stop and on those days I decided it was an all day party! :) I went all out and made no apology for my feelings. Usually the next day I was a bit better. I still do this when needed. If it helps you then I am glad I confessed it.

From everything I have read the Tensilon Test is a good test, but outdated....because they have this new fangled equipment to use instead. Try not let this inconsistency between docs frustrate you because it happens and it is out of your control. You know your body and your sx's.
I am here for you if you need to vent or have other questions. I did not have this avenue when I went through it and I felt so ALONE!
Sending you positive energy & thoughts Mary! We are all in this together!! :)
Peace,
Christy

Christy

Christy....I'm new to this forum too, but not to MG. I was first dx'd when I was 20 -- 44 years ago! Yes, it IS a roller coaster ride as someone else said. I have a mild case so it has been difficult to diagnose. I've had just about all of the tests available. Each time I would relocate and have to find a new doctor I could almost see their eyes light up -- at last something more challenging than colds and sprained ankles. They probably had not seen a case of MG since med school and then they only saw the really serious hospitalized cases. So, they'd put me through all kinds of tests -- some that were very painful too. Then they would say the diagnosis was wrong and it was all in my head. Finally, along with my pharmacist I did a double-blind test with my med at the time (prostignmine) and I could tell that it helped me. I proved to myself that I was sane....even if the doctors thought I was crazy.

What I have learned: No one knows my symptoms as well as I do. No doctor has seen me at my worst. No one is as interested in me and my health as I am. Learn that doctors are human and they sometimes make poor statements that might crush and confuse us, but we think they are super-human and hang on every word that they say. MG is rare -- don't believe doctors who say that they know everything about it unless they are a world-renown expert in the field of MG.

Hang in there. You will probably find your best supportive friends here on this forum because THEY understand. Even your closest friends might not understand why you want to be diagnosed with a serious illness. When I received a final (?) diagnosis from an expert at Hopkins after 14 years of confusion, my closest friends could not understand why I was so happy.

Whether you find a conclusive diagnosis or not, educate yourself and be confident to question doctors until you get some help for your symptoms.

May you have better days ahead!
BayLady