Restless Legs Syndrome (RLS) Discussion Board

I just moved here and have recently developed RLS. Unfortunately I don't have a good network here yet to help me get a good doctor for this. I'd really appreciate the help. I just have to get on some medication for this so I can start getting some sleep!

Be sure and read all you can about rls, before going to a Dr, you will find that most Drs know very little about rls, its best to be educated about rls before seeing a dr. There are lots of great web sites.www.rlshelp.org www.wemove.org www.rls.org www.mayoclinic.com

You stated that you just recently developed rls, could you tell us a little more about how the rls started? Have you recently started a new med of any type? such as antihisimine or antidepressant? Be sure to read about all the meds that are known to cause rls or to make it become worse.

Thank you. I've actually read so much that I could write a book on it. Now I just need to find a doctor who knows at least as much as I do. That's the hardest part.

Good Morning K8Samms: You are right, that is the hard part, finding a doctor that knows as much as you do about RLS. Especially since you have done so much reading on the subject. It is near impossible. In my experience, if you just find a doctor that is willing to listen to you and work with you.

I recently went to a new neurololgist. And after discussing my situation. I mentioned "augmenting". He very honestly said, "I don't know what that is". My jaw dropped. But I thought well at least he is honest. And he has been trying to work with me. He even told me, "You know more about RLS than I do, because you have it and research it."

If you want to read more. I suggest a book that is written by a specialist on RLS. "Restless Legs Syndrome, Coping with Your Sleepless Nights." By Dr. Mark Buchenfurer, and a couple other doctors. Everything you ever wanted to know about RLS.

Wish you the best. Hope you find a good doctor.
BETTY/WV

Wow, that is scary that your doctor didn't know about augmentation but at least, as you said, he is honest and will work with you and listen to you. It's so frustrating that this condition is still so misunderstood.

I've actually read a lot of that book you mentioned online. Excellent book. I noticed that Dr. Buchenfurer is located in Downey, CA. I just moved from Los Angeles and Downey isn't far from there. Now I wish that I had waited a little longer before moving out of that area.

I wonder if I might have better luck finding a knowledgable doctor at a sleep clinic rather than trying to see a neurologist in private practice. Maybe the sleep clinic doctors would understand RLS better. What do you think?

I wish there was a standard answer....there isn't. If you do some searches (it would be hard to find them, I imagine) and could find the older posts, you'd find horror story after horror story regarding just this issue.

I spent hours (days, really), calling nurses of the neuros and sleep docs who were in my insurance plan. After 8 or 9 doctors who didn't know as much as I, I finally "trained" my primary care doc. He became the best ally I have ever had....but I still know more than he does.

I've been trying for about 5 years. I still haven't found a Dr Buchfurer equivalent in my area. Heck, I'd be satisfied with someone who knew half as much as Dr B does.

And you're in a big city! Can't imagine how hard it must be for others who are less connected to find a good RLS doctor. I have a feeling that I'll be very happy to find someone with half of Dr. B's knowledge as well. At least I have this forum. It's so nice to talk to people who understand....

It's truly sad. I am sure someone is here....but I can't find him or her. One of my dreams is to have enough time to start a support group here (another thing we do not have) and through that effort to educate some doctors to be part of the support group, thereby making sure I have a doctor.

That's always an option if you have the time.

Wow, that's really shocking that you don't have a support group in Chicago. I'm in Kansas and I have a support group here. I made contact with the leader of the group and she has already given me some names of doctors. I am so grateful. The next meeting isn't until October but I'm looking forward to going and being introduced to others with this condition.

I hope you do find the time to start a group.

I'd guess that a rec through the support group would be excellent. If you find someone you like, please do consider posting his or her name here.

I saw Dr. Dubinsky at KU Med Ctr when I lived in Topeka. Try him and see if you like him. It has been several years since we lived there though. Good luck!