Restless Legs Syndrome (RLS) Discussion Board

I was getting a little worried when I hadn't heard from my doctor's office; thought I would have to start calling places myself. But a mysterious Russian-accented lady called this afternoon to set up the appointment for next week and assured me that Injectafer was a very very good solution. Apparent...

I am so happy to announce that--on RLS Awareness Day, no less--I have finally succeeded in getting a doctor to order iron infusions for me! I have to thank the people here on this site who helped me get this done. From a suggestion by ViewsAskew, I wrote an email to Dr. Buchfuhrer and was astounded ...

Steve, I actually liked that group very much and was getting good help from two of the admins. That's why I was surprised that I got banned. I had to join under my husband's FB account just so I could find the names of the two admins (I had forgotten) so I could ask them if they knew why I was banne...

Last thing before I try to nap: even though Dr. Rye's page says he can see new patients within 3 days, that was completely false advertising (as I thought). They've got nothing at all for me, but the nice young lady who tried to help is sending a message to his team to see what they can do. Crazy th...

Oh my gosh, my rheumatologist got a cancellation so I get to see him first thing tomorrow morning! He is the one who prescribed me Requip in March*, so he obviously doesn't know about iron being the first line of treatment, but he's also a good guy who should be open to learning more. I'm sure if I ...

Oh that's a great suggestion! I forget about Emory. My husband and I were planning a road trip from Birmingham to Gettysburg, and I wondered about trying to get into Johns Hopkins--didn't even think about the one closer to home. Thanks SO SO much for Dr. Buchfuhrer's email address! I actually called...

I'm at the end of my rope. Don't know how to go about arranging to get iron infusions since my PCP and now my new neurologist won't order them. I'm feeling beaten whereas before I had felt well-armed with all the knowledge I had gained from joining the RLS Foundation. I am going to try contacting In...

Did you ever get your mattress? The funny thing for me is that 3 years ago my husband and I splurged and got 2 adjustable twin XL beds from a local mattress store where they make the mattresses themselves. Bought them because I was--and still am--going through a lot of back/hip pain. Unfortunately t...

Gee, I had an appointment tomorrow with a different neurologist but assumed he wouldn't be as good as this one, so I cancelled it. I think I will add to my note: "Are you telling me that no neurologist here at UAB who works with RLS patients sends them for iron infusions? If that is the case, then U...

I spent a long time composing a note to my new neurologist begging her to send me for an infusion so that I might possibly be better in time for a planned road trip in a few weeks. Very disappointed in her response that they have very few people who need iron infusions and she has no channel to get ...

Yes, I found it quite perplexing: the evening of the day I was SO happy to meet the new doctor, I didn't sleep at all. And the night after being completely traumatized by that crazy woman from the RLS group, I slept 11+ hours. But I DO know that to celebrate meeting that doctor, I had quite a few co...

Thanks for your emails, Steve and Ann! I just sent a rather passionate plea to my doctor to beg her to try me on an iron IV, wondering why I needed to suffer another 1-3 months before trying. Told her I'd pay out of pocket if necessary because I'm that desperate. UAB has a great patient portal and s...

Thanks, Steve and Holland, While saving and printing out the article you linked above, Holland, I realized that this is the very article that got me banned and blocked from a Facebook RLS group. It's a long story and had me quite quite upset yesterday, but I had had no sleep for 2 days in a row and ...

I'm relatively new to RLS. In March, my rheumatologist prescribed Requip for me, but while it worked great at first, I just couldn't find a dosage that didn't leave me completely groggy the next day. It was either sleep at night and be groggy all the next day, or don't take it and have restless legs...

Saw the neurologist on Friday and was quite delighted with her. She's a young woman, really interested in RLS and has taken part in research about it. I didn't understand much of what she was trying to show me, but she has been studying some kind of RLS connection to the spinal cord. Also "Restless ...