My insurance is covering 80% of the cost. The testing is very expensive, so I am still going to have to pay a good chunk of change out of pocket. My MDS said that this testing is more conclusive than what they do at 23 and me. I asked her about that because I had heard that was free. I still may go ahead and do the whole 23 and me thing anyways. Is it conclusive, or does it just give you a percentage of how likely you are to develop a syndrome?

All I know is that yesterday when I saw my Neuro, he said that I definitely have some type of parkinsonian syndrome. Guess it is just trying to figure out which one. At least I know that it isn't all in my head. After that negative DaTscan, I just didn't know what to think anymore!

The PINK 1 sounds so much like me. Young onset, symmetrical early in onset, dystonia from onset; including cervical dystonia which I have, exercise induced dystonia, issues with lower extremities, a good response to carbidopa/levodopa. I read more, but can't remember everything I read. The things that I just mentioned are the things that define my experience almost perfectly! I don't want to put all of my eggs in one basket here, but I hope this gives me an answer.

I will keep you posted on the results. My appt. to follow up on the results is scheduled for March 21st. Can't get here soon enough!