HI all,
Thanks again for the replies and great to hear from you and get your experiences.
To inform all of you, I do not have SM/CM. I have an affected family member with unknown etiology. There was an accident several years ago, which
may be a cause, but or NS says she does not believe it to be. Therefore we are exploring all the other possibilities and routes, and have gone through an extensive array of tests (both neurological and other systems) to find clues. I am currently researching and looking up scientific articles to get a better perspective, as well as, educating myself about the nervous system and its interactions. Having a lumbar puncture next week, so maybe there will be some useful information there.
I will get more in depth later, at work right now.

Regards,
Den
edit: I am also planning on building a resource containing the information being collected and reviewed. I hope that it may serve as a reference for others, SM/CM friendly docs, hospitals, scientific research (I work for a University, so have endless resources), etc etc. Just trying to make sense of it all and help those affected along the way.