I have to say I am frustrated with the medical establishment in our experience. Throughout these past 3 years of seeing doctors and doing my own research, setting up appointments with the doctors necessary to to see based on information I gathered, going for different opinions, happening to come across a very select few doctors who were even interested ( I am grateful for their help), being fortunate enough not to need referrals with my insurance which has allowed me this freedom, not sinking into misery and depression..... it was I who had to figure this all out from the beginning. I knew from the beginning that we obviously had a genetic predisposition to some triggering exposure and now there is just a name for it (collagen disorder) which is an official diagnosis for one of the problems, and a vague autoimmune manifestation that they can't name.

The new neurologist had the whole package put together in the database of all the doctors that it took me 3 years of gathering opinions, forwarding all reports, requesting testing, and leading the horses to water.
This doctor in (her defense), was quick, sharp enough, and prepared with my case file for which I was grateful and impressed, but she is the horse that was brought to the water and who drank.

I don't mean to be obnoxious, but I can't help feeling so disappointed that it was I who had to figure this out and navigate through the dysfunctional medical system to get a partial diagnosis as to why our nerves are sick, and still not have a solution. It makes me so upset to think of the people all over the world who are going through this, with having to rely on doctors for referrals, or not having the ability to research medical literature, in general how devastating neurological diseases are, and the lack of knowledge even by most neurologists on these types of conditions when so much of it is basic dysfunction of the peripheral nervous system- so the complaints and symptoms SHOULD be understood, yet people are misdiagnosed, give up hope, are put on meds they shouldn't be on, or not given meds that are needed. I won't keep going on, and after saying all of this- and it's vented, I am okay, happy enough, thankful for all that I have, and be glad that I am done going for opinions and found my set doctors for each condition that comes along with this.