I've been seeing a Neurologist lately and the eeg and nerve conduction study were normal. I was told I didn't have anything wrong. I'm in tears right now because this is so frustrating. It's been more than ten years of this and I'm so tired of tests not getting to the bottom of things. The test for the nerve conduction was done on my right hand only and the eeg was done while i was bending over a chair on the back of my neck and in my arms. It took about five minutes in all. the nerve conduction study - the guy had the wires in wrong at first and blasted me with pain, and after he switched the wires around he had to turn the thing way down. They are going to try and get me into the Mayo clinic, but there is only a slim chance. I give up... They are probably going to take me off of pyridostigmine too.

ugh, how frustrating!!! Who diagnosed you in the past - can you go back to them? The mestinon helps you? Why can't they just leave you on it if it helps - regardless of your diagnosis ? My neuro is so close minded it's frustrating - a negative test means you don't have it period - they don't think outside of the box - they dont' even consider seronegative diagnosis.. so incredibly frustrating.. keep us updated!

I was diagnosed by a Rheumatologist, because of a positive anti ach antibody test. It was positive for modulating antibodies. The Rheumatologist gave me the pyridostigmine to see how I reacted, and my reaction was good, but this Neurologist I'm seeing says that he can't count on my reaction, he needs actual data. He asked me how the Rheumy knew I was doing better, and I said "because I told him." That isn't enough for this doctor. He was condescending, making me feel as though I'm lying about what's going on. I hope I get approved to go to the Mayo clinic. With this Neurologist, I felt like I was on trial. He kept asking me questions that I didn't know the answer to. He was very intimidating.

There is evidence in my family of Channelopathies and I think this needs to be looked into. Whether or not it's MG, I know there is something going on. The thing I don't understand is that the last time I saw him he commented on how weak my muscles were. So, why am I made to feel like I'm on trial? I really don't think I'm imagining all this. If I am, then they need to refer me to a psychologist.

I'm confused. You have a positive blood test and he still doesn't think you have MG? that doesn't sound right. Unless I am reading this incorrectly, I would like for you to know that I was diagnosed with MG and the single fiber EMG was tried on my hand and on my forehead and it didn't come back positive. They said it was normal. I mainly have/had bulbar symptoms. I have confirmed mild eye lid weakness now and I do get fatigued easily that tends to get better with rest. I have the positive ACHR test and had it reran at multiple/different labs and it has been confirmed each time. I'm really sorry you're going through this . Please hang in there and keep your chin up.

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.

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.

Dear quandry,
no one needs to get you into the Mayo Clinic. You can just call and make an appt. They have very skilled people who answer the phones who will help you get an appt with the correct Dr for your condition. Or help you make an appt with Dr of your choice. I've done this before, not for MG, but for another condition and got right in the same day! I was lucky but it can happen.


Bobcat

I went to the Rheumatologist that diagnosed me. He talked to the Neuro and the Neuro told him that I don't have MG and that the fact that the Pyridostigmine works on me is purely psychological and that he was closing out any more work on me. The Rheumotologist told him, "no", and he is going to get to the bottom of what's going on with me. However, I have to go back to the doctor who thinks it's all in my head and get a referral to the Mayo clinic; something I thought was already in the works. The Rheumotologist is still giving me the pyridostigmine in the meantime. I hope they don't take it away.

Hang in there Quandry, you have one doctor who wants to get to the bottom of this and positive lab results on your side. The MAyo clinic will not dismiss them so easily. you are going to one of the best facilities for MG in America. I am sure you will have a positive experience.

kathie