It really kinda went over most MSers's heads. They had no idea what we were discussing and then it was cut short with no more than what I could share.
The loud vocal rebuff from the NMSS person just puts an MSer at ease, tho doesn't it?
A while back I had mentioned how excited my Opthomologist was when he learned of CCSVI and met me. The one lady who had asked the Neuro about the 'vein thing' stood up and yelled, Are you Dr. Aukers' patient??? I said yes. and she started to cry because he had told her all about me and my success but could not share my personal info.
She was very excited. and my opthomologist has been very active in spreading the information! I thought that was super cool as he has a very large and well respected practice. Very cutting edge and people come from all over so he gets alot of people to talk to about it!
And thank all of you guys here for your support.
I was very unsure about how it would go down, and I knew if it didn't come up I would bring it up at the end.
Oh, forgot. There was an RN at my table who was there with her daughter. As we discussed the CCSVI and how Neuros are not on board with it she just said, "Turf Wars". I didn't understand what a huge issue Turf Wars (Ego Wars??) are in Medicine. She spent some time explaining how large the issue is in the Medical World.
I just thought everyone wanted everyone to feel well.
Oh, another thing. There was a mother with her daughter. Her daugher was probably in 20s or 30s. Her daughter was wheelchair dependent, could not feed herself, or talk. I did not see her turn her head and barely her eyes. Her mom takes her to all of the dinner meetings and they drove over an hour to go to this one. I was surprised when the mom said We are happy that she is RRMS. The Neuro says she is RR because she has some good days and is not completely bed ridden. !!!!!!!!!!!
I went with her to the car to help her transfer her daughter who was completely dependent on her mom for that. A wonderful mom for sure and very involved in the every hour care of her daughter but how could a Neuro call that RR??? It would appear to be Progressive to me.
I don't know. Just reporting back. So sad. Damn I want this MS thing GONE.