Find Neurologist to Answer Questions

[TompeteA]

Has this site contacted any neurologist's to answer questions. I have been on and off this site for two years, and have just recently started to post. I would think we could find neurlogist's from different parts of USA or around the world to respond to posts in a neurology forum. Has this been tried in the past? The personal experiences that are shared on this site can never be replaced by a neurologists, but on the techinical questions that frequently come up, this would be a huge asset to this site, thoughts?

 

[inzTwoToneTunes]

I mentioned this site to all 5 of my neuro's and all of them said the same thing- "stay off the internet for advice". I don't think they want to get involved. There are other sites that do offer medical help and advice from top neurologists ( for a price ). They say a lot of the same things we say here.DD

 

[TompeteA]

DD, I had the first Neurologist I saw basically tell me "stop focusing on the twitching so much, everyone twitches". Without this site, I would still probably be a mess, it is hard to comprehend a Neurlogist tell you there is nothing wrong and to just deal with it, when these physicall symptoms are ruining your life, it brings be great relief to hear peoples stories who are going through the exact same thing, until I started to view this site, I leterally thought I might be going crazy. It took a Neurolgist at the Mayo clinic to really get me over the hump. He talked with me for over an hour. He understood that I was having a hard time accepting nothing was wrong, and talked in great depth about the tests he did and about ALS in general. It is the combination of this sites personal stories, and a Neurologist that understood what I was going through to get me going in the right direction, and that is why I posted about a Neurlogists invlovement. Most Neurlogist truly do not understand the severity of the discomfort that some with BFS go through, but some do, and I think they would be of great benifit to this site