I gave careful consideration before approving your post below. Let me explain. As far as I know, my MSA web site and the information contained therein is the only private web site available – all other similar web sites belong to organisations. My web site attracts hit from all over the world daily. I am 74 and not enjoying the best of health myself and could quite easily retire this site and leave the issue of promoting MSA to others. I personally do not have the time or energy to do anything other than keep this site running.
I have enormous sympathy with what you are going through and how you must feel. Although I do not have MSA myself, I was the Carer for Patricia for many years. We both suffered in our different ways and 11 years after Patricia’s passing, I am still suffering to a degree. Watching her deteriorate so slowly was awful.
I must say that when Patricia was first diagnosed with MSA-P, I asked her Melbourne based neurologist for a second opinion. He had no problem with that and we ended up getting three further opinions and all were carried out within a few weeks. One of the other neurologists was also a genetics expert. We discussed the findings with her primary neurologist and saw no reason to change doctors. This neurologist kept us as informed as he could with all developments that he was aware of including attempts to discover what was causing MSA. Sadly – still nobody knows but believe me people are trying.
I am not able to carry out or initiate any such surveys. But there was one such done in 2014 and you can see the report here. I have no doubt that other surveys are being done or considered but I am not aware of them.