Hello. I am a Lewy body Dementia / Atypical Parkinsonism and Myotonic Dystrophy 2 (muscular dystrophy) patient. I can empathize on some of the neurological conditions. You mentioned the olfactory hallucinations - isn't that the worst? I ask people if they "smell that" and the answer is smell what?
Your comment about the diary is something I always suggest to help people help their docs. As you mentioned with the sleep studies - it isnt always an issue so many studies aren't valid. Same with neurological symptoms that arent constant. The doc can't observe them for a clinical finding and you cant just make your body jerk on demand.

Do you find that the more violent movements are in your shoulders? That is where my issue withe these major movements. The others are all over the place.

Do you find that certain social situations are hard? I have problems with larger crowds where there is a lot of people talking. I cant concentrate on one thing but hear everything at once and it is overwhelming.

Have you done any neurocognitive / neuropsych testing? It has helped us to determine which part(s) of the brain are effected.

Sorry for all of the questions - I am intrigued to hear about others experiences. Who knows by chatting with someone that has many neurological issues can shed some light on things.

You've done all of the other tests that I went through. However my nerve conduction study had problems which led to genetic testing and the Myotonic dystrophy diagnosis.

I know it's hard. From someone that faces some of what you are going through - you aren't alone. I have learned to not dwell on the many things I cannot do anymore (drive, walk with my grandchildren in my arms, eat certain foods, avoid certain social situations, tasks like finances, cooking to mention a few) and look at the things I am still blessed to be able to do and some of them better than others. For instance - how many people would take 25 minus to type this? How many people can write a 3 page novel to get a point across that should take a few sentences? How many people can see that spider that isnt really there? Me!!!

Dont lose your sense of humor!!!
It keeps me going.

Peace
Larry H.