@cpj88 Part I (my post is too long and needs to be subdivided)

@cpj88 In answer to cpj88: For 12 years, I thought my affliction was muscular--just very weird, because it only happened when I was asleep, or sleepy, and it stopped when I got up and walked.

If I had been diagnosed with RLS back then, I would have been prescribed a dopamine agonist drug, like so many folks on this forum. And, I would have taken it.

When I finally did get a RLS diagnosis, it was from the neurosurgeon my primary doctor sent me to. She thought I must need spinal surgery because I went on and on about how painful my symptoms were. She also prescribed a limited amount of pain pills--which taught me that opioids work on my RLS--although, after the Opioid Crisis, no doctor was going to prescribe them for me.

After diagnosis in the neurosurgeon's office, there were a few days before I went back to see my primary doctor and by then I had googled the heck out of RLS and I knew dopamine agonist drugs weren't a good idea—because of augmentation. So, when my doctor tried to prescribe Requip during my follow-up, I firmly said "no."

I had picked-up on the fact that dopamine agonist drugs had the "future-downside" of augmentation, before my family practice doctor learned this. Maybe, she still doesn't know it.

That told me to look for a RLS "expert." "Everyone local” would have prescribed something similar to what my primary wanted me to take.

My primary doctor is competent, but she isn't "cutting edge." I realized I was on the cusp, where competent doctors were all doing the same thing (the same wrong thing) and only the cutting-edge doctors (the ones who specialize in treating RLS) had changed their thinking (about the safety of dopamine agonist drugs for RLS).

I had read on Dr Early's webpage about augmentation and tried to "get in" with him. Unfortunately, because of mis-communication with their out-of-town concierge, it took me 9 months of useless waiting before the "concierge" figured out there was no forthcoming appointment…Dr Early only sees patients who live in Maryland. (He's at Johns Hopkins).

While I lacked an RLS expert to turn to, my primary and I compromised on gabapentin--which (after a 6 months trial) never worked for me. At the same time, I periodically looked for another RLS expert, because I had read IV iron could address the root-cause of RLS and I wanted to try this with a doctor experienced in giving IV iron for RLS. It was obvious my primary doctor never had. Her faith was in dopamine agonist drugs---full-stop..

I found J. Andrew Berkowski, MD, then at Cleveland Clinic, because there was a video (created and posted by Cleveland Clinic) about RLS and I watched the whole thing. At one point, well into the video, Dr Berkowskii said he would never prescribe a dopamine agonist drug (because of augmentation). I sat up, immediately reached for the phone, and called for an appointment. I found my expert! It was three more months, however, before I actually got in to see him.

"Dr Andy" and I tried the IV iron and then pregabalin and neither worked. By that point, he was leaving CC to start his own practice--only treating RLS (his true interest and passion). It's called ReLACS Health (there's a website). He explained he was going to do "concierge medicine"--private pay, not through insurance--and that made me nervous. Dr Berkowski is about as solid a human being as I have ever met (not the kind of person to rip anyone off), but I was afraid the cost would be prohibitive. (Spoiler Alert: I found his fees to actually be quite reasonable.)

Next, I tried to get in to see Dr Winkleman at Mass General in Boston. I found his email address and asked for his help via email (whining to him about how much I was suffering). He responded by emailing instructions to call for an appointment. When I called, the scheduler said he had nothing for the next 18 months and that was as far out as the scheduling went. (Basically, I could never get an appointment with him). I could have seen someone else in that practice--and I assume all doctors treating in the same institution as the "big-name expert" will have the same approach---but even "someone else" didn't have available appointments for months.

So, I contacted Dr Berkowski--because I needed (by this time) immediate help. I was in a deep, deep hole. Also, I knew him. I had seen him 3 times while he was still at Cleveland Clinic and I was impressed. He's so smart, so knowledgeable, and such a good person.

Dr Berkowski only does telemedicine where he is licensed: Michigan, Ohio, and Florida. Telemedicine. He doesn't see patients in person. I travel to Ohio for my annual telemedicine visit (on my computer) and to pick up my prescription every 3 months. I can also email him or call him anytime. "Dr. Andy" also helped by prescribing my Nidra bands--something I read about in the medical literature (on PubMed). He had already prescribed these for a number of patients. They were a new (just approved by the FDA) prescription-only device that the company released state-by-state and I wasn't qualified (by location) to get them until April 2025.

I take a little bit of Suboxone for the buprenorphine it contains.It's like Methadone, primarily used to treat addicts--but according to Dr Berkowski--better in terms of side effects etc etc. AND, I have worn the Nidra bands religiously since April 2025.

It took months of use, but the bands (I swear this is the truth) not only stop RLS episodes for me when the episodes occur, also, over time the frequency and severity of episodes has declined--to the point where I have only had one episode, at night, during the last (about) 8 or 9 weeks. A couple times I've had a few episodes during the evening, before I took my medication--but nothing that disturbed my sleep (beyond the one mild episode.)

Last night I slept 7 hours and 22 minutes. Without any RLS. Without wakening. Just slept. Fitbit gave me a sleep score of 87. (Now, I'm bragging--forgive me!)

This, cpj88, is greater success than I ever hoped for--ever could have imagined. I came from multiple episodes, every night--sometimes, it was just one long, unremitting, never-stopping episode. I came from the worst of the worst (insomnia thrown in and some PTSD about sleep) and now I am in the best of the best.

Boy! Am I grateful!

(part to posted separately)