Seen a Neurologist for BFS?

[Grigoli]

For those of you that have seen a Neurologist, have you found them to be aware and knowledgeable about BFS? I saw my GP today and she suggested I see a Neuro for peace of mind. She thinks I am fine, but drew some blood work just to check for this and that. I have an appointment with a Neuro in about 6 weeks and I am not sure what to expect, and if I should tell them about BFS or let them tell me. My GP also told me that this particular group does not have a very good beside manner. I am a bit intimated by the whole thing. Any suggestions on what to look for in a good neuro?

 

[Carter69]

I think seeing a neuro for peace of mind is a fine idea. But I would also state that you are not bound by anyone to go to any nuero. As long as you can get the proper medical coverage, I would do some research. You may call up a neuro's office (who is on your plan) and ask if the neuro can diagnose BFS. It's YOUR body... YOU'RE the boss. Many people don't understnad this, and that can cuase problems if you don't insist on doing things the way they are comfortbale with.

I'm not sure about the percentage of neuro's who are familiar with BFS. Some neuro's specialize in different areas, like Alzheimers, and may not know about muscular related nero diseases. They would be happy to see you, but you may wind up just being defered to another neuro - i.e. more waiting and more costs.

Get it right the first time. Call up the office of the neuro you're scheduled for, and find out what specialty they have, and see if the neuro can diagnose BFS. If not, look around and find one that can.

 

[CursedLeprechaun]

After my initial visit, the neurologist told me that the twitches were "benign fasciculations" and nothing more. At my second visit, about 6 months later, I mentioned to him that I had found this website and asked if I had BFS. He had an incredibly confused look on his face when I mentioned the word "syndrome" to him. I would say that he was NOT aware of BFS. I think that his concern is whether the fasciculations are benign or not.

I don't know what to tell you about qualities of a good neuro. Mine was on my insurance plan. Another poster here has gone to the same doctor and has had good things to say about him. If you provide this group with the area you live in, you may find some people who have had experiences with the doctor you are going to see.

 

[Grigoli]

Thanks for the suggestion. I live in the Minneapolis, Minnesota area. Of course Mayo Clinic would be an option but they are about two hours away. Not that it wouldn't be worth it to go there, but you really can't get in without a referral. If anyone knows of a doctor in my area, please let me know. I'm so scared.