My most recent neuro, the 10th one I've seen, couldn't find anything with blood work or EMG, so he sent me to endocrinology. (Been to one already, we're going in circles.)

First visit, after reviewing several pages of normal test results from prior endocrinologist, as I sit in her office unable to open my eyes and having trouble holding my head up- Her: Did the neurologist check you for MG? Me: My labs and EMG's were normal. Her: Why can't they just give you the medicine trial to see if it works?

Second visit, after more normal testing. Her: I think you could have non-specific antibodies causing problems. Why can't they see if Prednisone will help? Me: Several years ago I had prednisone for a very bad chest cold, and then had several weeks of "remission," but later when I told my doctors this they don't want to try it. Her: Ask your neurologist, but don't tell him I said so. They hate that.

She ordered an ACTH stimulation test (I had a normal one 6 or 8 years ago) and said if it was abnormal she could give me Prednisone herself.

She is so wonderful and understanding and willing to think outside the box, but won't treat me for something that's not endocrine-related. How do I find a neurologist who will be open like this? Is it a neurology thing to be so black-and-white? Is it a male thing - do I need to find a female neurologist? I might not have MG, but why won't they at least try some therapies before saying, "Gee, I don't know, and I'm done with you. Learn to live with it"

Have you tried mestinon? Did it help you?
Mike

That's the way my neurologist is. (wonderful, understanding, willing to think outside of the box etc.). And he is also not saying-"I am done with you, learn to live with it", but doing his best to help me do so, with "out of the box" symptomatic treatment and supportive care. He is ready to put a lot of efforts into every minor improvement and is not let down by unexpected exacerbation s, but ready to start all over again.
Every time I see him, I ask myself why can't all neurologists be like that.
He also has no problem saying- I really don't know, what do you think? (and really mean it). I hope this gives you hope that you too will eventually find someone like that.

I agree with Alice. Keep hunting. My neuro is very understanding and even mentioned me seeing a Neuro at Duke just to get his opinion. He goes into detail explaining each of my questions and makes every effort to improve my quality of life. He enjoys each improvement and is disappointed in each setback. All that said this disease is very difficult to treat and I'm not sure there is a Neuro that has the answers.
Mike

I am not sure about that. I think that like every disease, some are very easy to treat and others not so. I am not sure we are a representative group of patients. As we all seem to have less typical and harder to manage disease.

I believe that patients who have a fast and easy diagnosis and remission are busy living their normal life. To be honest, I am quite sure that had I gone into complete remission after my first hospitalization I would be much less interested in learning about this illness, meeting other patients etc, and probably would have been very busy working, just like I was before I became ill and quite content with not knowing more about this illness than what is written in my text-book.

Geode, Maybe if enough other doctors document this and forward notes on to a neurologist, they might start to see the picture.

I can't remember - have you seen a pulmonologist or a neuro-ophthalmologist to further document your symptoms?

Is there anyone in your area who can recommend a good neuro to you? Sometimes an "expert" can be good and sometimes a "regular" neuro can be. I personally think they ALL should be good at taking care of MG.

Don't give up. It sounds like you have at least one doctor who can see what's going on. Does she know of a neuro you can see?

Annie