I wonder if any of them think about how their frustration affects us. I went home and cried when my neurologist dismissed me. Here I was with a progressive, painful, crippling disease at 48 and no doctor to work with me beyond pain medication which I know I am fortunate to get. Īt seems so unreasonable that I feel like it must really all be in my head, except that so many of us have exactly the same experience.
My greatest need is to be periodically reassured that my weakness and pain are consistent with my test results, and I do understand that she didn't go to school forever to do that, but it would mean so very much to get 15 minutes a year of confirmation, with an EMG or skin biopsy thrown in once in a while. The trend in medicine and insurance seems to be that once you have a diagnosis that is progressive and incurable you are done. It is all checklists and cost benefit ratios, and it isn't going to get any better.

I am sorry that you are not getting more attention paid to your dilemma, Jon. They hand out Cymbalta and similar medications like candy but they can have more side affects and be harder to discontinue than opiates.