It sounds like you have an unusual case. Which means you need to be the most powerful advocate for yourself. Contact Social Services in your county. Talk personnaly to the editor of a local newspaper to write a story about the conditions you are forced to live in. If your neurologist works at a large university, contact the Director of the Neurology Dept. and explain that your neurologist is not helping. Ask if a student interested in neurology could work with you. The interns have more leeway with funding and time to try more testing. Be the loudest greasey wheel oout there.

I have been where you are. I saw a department directer of a major movement disorder clinic. I was told by this man after a diagnosis of Paralys Agitans for over 10 years that I did not have PD but had delayed stress syndrome. The doctor talked to my husband but would not answer me why Sinemet was successful in treating my symptoms. My regular neurologist, maybe too awed by the title of the consultant he sent me to, accepted the consulting neurologist, and would only allow mw a second opinion. I went to a former neurologist I used to see at the Mayo clinic. He suggested a DNA test. The only other evidence I could get was to fly to either Mt. Zion in New York or Los Angeles in CA.to have an FDOPA Scan. I live in MN. Fortunatly my ex-husband had enough frequent flier miles to get me a round trip ticket to New York. I had Both tests which proved the consultant wrong. The DNA test showed 2 mutations in my Parkin gene, The F-DOPA scan prooved my brain was failing to uptake dopamine. I wrote to the consulting director of the test results and his responce was to insist I have his clinnic perform a MRI. After that he insisted I allow his clinic to try me on different meds. Knowing this could take forever, I contacted a National Parkinson's advocate group that gave his name out for DBS surgery. The director contacted him. He met me one more time but still would not allow his OK for the surgery. He sent me to anouther location who had a surgeon who could do the surgery. My neurologist advised against the surgery but allowed me the final decision. I had the surgery and was able too drop the amount of Sinemet I take to 1/3 prior to surgery. I know it helped me.

Persistence, creativity, and Faith that you are the only one living in your body and knows what it is feeling are the strongest tools in your tool chest.
You make use of these and miracles can happen. It is hard to be forced to use them when you are depressed or feeling hopeless, but apply them and you may know yourself better and strenghthen your understanding of your brain.

Best of luck,
Dianna