I could repeat the incredible journey to diagnosis that I went. And, I could detail my ongoing struggles with neurologists. Since I have already written about it on my blog you can read it there if you choose.
I have come to expect neurologists to discount and disregard my symptoms. Here is an example of how I deal with this. My current neurologist doesn't believe that pain is associated with MS-he suggests ibuprofen. After that visit, I went home and found an article on the internet (in this case from the MS society) that clearly detailed the medical evidence for the symptom. Then, I faxed the doctor a copy with a note referencing our visit and the discussion. On my next visit I brought the article and made sure we discussed it. He still has doubts, so I also went to see a pain doctor who is commited the treating MS pain. I also keep a journal of my symptoms, questions, and research.
Now, when I go to the neuro with a specific problem in mind to discuss I:
--write down my specific questions
--I bring supporting documentation
--I find other doctors or therapists in specialties related to the specific problem
--I set a personal boundary that doctors do not define my illness, my experience with my body, or my treatment options
--I bring a second person to keep notes from the discussion
--depending on visit frequency, I request copies of my patient records from all providers and keep them on file. (Under federal HIPA guidelines you have the right to do this). Also, if something is written in my chart that is defamatory, judgemental, or just plain wrong I request in writing that it be changed, taken out, or that additional information is added (other docs notes that present a different picture, test results, etc.)
After years of allowing doctors to define the reality of my illness I have come to realize that I am the only one who know my body. I am in charge of my health and the doctors should be working for me. Be educated about the disease, do research, ask questions, and demand the healthcare you deserve.