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

Thank you all for your responses. I am very happy that there is a doctor who is willing to fight for me and it seems that in these days he is a rare doctor. I do hope that the Mayo clinic can get to the bottom of what is going on.

One thing that bothers me about the Neurologist is him saying that my reaction to pyridostigmine is psychological. I take 60 mg four times a day. I think this amount might make me weaker if I was normal. Sure, it does make some muscles in me weaker, but my breathing is improved. I may be overdosing some muscles, but breathing is more important than anything else and the majority of muscles benefit from this. If it were psychological then I would have continued to take other meds to appease my doctors, but I haven't. I refused prednisone because of a bad reaction. I refused Cymbalta because of a bad reaction. I've refused Imuran because of a high cancer risk due to many family members with cancer. I've even been scoffed by this Neurologist for treating my jaw pain with Capsaicin and by chewing on hot peppers to relieve pain along the gum line, but I know it helps. So, if I know the difference between what works and doesn't work, then how can a doctor be so dismissive and accuse me of imagining that pyridostigmine works?

The whole time I spoke with this doctor he was demeaning and arrogant. He hammered me about having both negative and positive results in the past. He hammered me about everything as if I was on trial with remarks like "Oh, so you had negative results before, and Oh, you had this before, blah, blah, blah. If I signed a release of information, shouldn't he know all this?

I can't always remember to tell a doctor every detail with so much going on. Don't doctors do anything more than just review their own notes? When I told him about chewing on jalapenos for my pain he said "So, you rub jalapenos on your gums." I said, "I chew on them." He said again, "So, you rub jalapenos on your gums." It was like whatever. He kept changing whatever I said. Everything I said he kept misinterpreting. He totally dismissed some of the facts he noticed on my first visit. I told him my legs weren't as bad as my upper body, but when he had me lift my leg while in a sitting position, it was him that said my legs were weak too. How can he say he's going to close the book on me without following up? How can he twist things that I say around like a sleazy lawyer? The other Neurologist I used to go to was trained under this one and now I can see why I never got results. I'm am just so frustrated because it seems that some doctors don't do their homework anymore, but I do really appreciate that the Rheumatologist is fighting for me and is willing to think outside the box.

Hello Quandry I'm glad you have such a good relationship with your Rheumatologist. Often, all it takes is one, good doctor to get you through to a diagnosis. It's not uncommon.

I'm going ask you to think about something. Keep in mind that I am just offering you and many others in your situation...food for thought.

Sometimes, not always, but sometimes when we refuse medications that could be of help, we are sending mixed-messages. Here's what a doctor might hear. "Hurry up and fix me, but I'm not taking any meds. I know what's wrong with me so I'm going to tell you what to do. I won't do most of what you ask but help me." And while I believe very much in some of the old remedies, telling your doctor that you are munching on hot peppers isn't helping the situation.

So, give this some thought. Ask yourself again, why you aren't prepared to let him help you...take some time with this. I risk having you mad at me, but that's okay, Quandry. You (and everyone) else are worth it.