OK, so once again I made an attempt to find a local neurologist and, once again, I failed miserably (or rather, they failed me). I have one, who is three hours from me, that I love, but we both agreed that it would be good to have a local one to help me out if needed. I have a new PCP who is wonderful and he is the one who feels very strongly that I have MG and he prescribed the Mestinon (this trial was suggested by my eye doctor and I called my out of town neuro to ask her opinion and she wanted me to start it too).

The first words out of this neuros mouth were "What to you expect out of this visit?"....Well, I was kind of taken aback by his tone and the question itself (not that it's a bad question, but as I said, it was his tone), so I started to tell him my symptoms. Then he said. "No, I asked you what do you expect out of this visit?" I said I want to find a doctor who will help me. He starts in on how many doctors I've seen in the past, how he just spent 40 minutes reviewing all of my records. Some of which, I don't know how he got. One record was a neuropsych test I had done early on that said I might have an element of conversion disorder to my illness. I have since read that any time you mark that you have pain, tingling, etc it automatically puts you in that category whether those are real symptoms from a real medical condition or not. I had another neuropsych test later which did not show that to be the case, but I have to admit I purposely did not mark the pain questions...funny how that works. I also saw a counselor and he said def not a conversion disorder...he explained how the personality tests aren't always accurate when a person has a chronic illness. I can tell you this, I'm certainly not getting any secondary gain from this. I still do 98% of the housework, still cook, still work, etc. I don't get any specialized treatment from anyone and I really don't want it. I do get help when I ask for it, for that I am thankful.

Anywho, this neuro says that I should stick with my out of town neuro because she believes that I may have mitochondrial disease. Then he tells me there's nothing they can do for that anyway. Not true. It's not curable, but there are some treatments. He said he felt like I was too complicated of a case and I would be much better off going to someone who knew more (I can't argue with that). Anyway, he said I could continue taking the mestinon, but he'd rather my other doctor prescribe it. I started wondering if he might have been concerned about getting sued if he took me on as a patient. He said that the Mestinon could be giving me a placebo affect. Huh?? I'm not saying that's not a possibility, but if that's the case, why isn't it more consistent? Why does it help me sometimes and not others. He also mentioned how many neuros I'd seen in the past and I said it was because I'd see one then they'd do one test, then blow me off. He did say that I should have a single fiber EMG, but said they aren't done locally. He never mentioned the MUSK test. He did say you could have MG and the blood tests wouldn't show it, only he more or less said he didn't prescribe the Mestinon unless it showed up on the tests...huh???

He did finally get around to doing a five minute neuro exam. He said I had some "funky eye movements" going on (his words). Really? If he would have let me talk I could have told him what was going on with me. How my eyes get so bad I have a hard time driving at times, how I have difficulty breathing, how I have trouble folding laundry, washing my hair, walking even!! I told him I have a good life. I have a wonderful family, wonderful job, I am blessed. I just want to feel good again.

Part of me is glad that he took the time to review my records, but honestly, another part feels as if it's a cop out. He had already made up his mind before he saw me that he wasn't going to be my doctor. Why can't doctors look at you through fresh eyes... their own??? Do they have that little of faith in themselves??

I'm trying to decide if I should continue the Mestinon or not. I'm going back to my PCP to discuss this and also making an appointment with my doctor in Indianapolis.

Thanks for letting me vent and for any input you can give me.