RLS physician/expert recommendations

[ircam2112]

Hi all. Hope everyone had a good holiday season. As my treatment by local physicians is iffy at best, I’m going to seek care from one of the experts in the field e.g.) one of the authors of the Mayo Clinic Algorithm who also practice in the USA - Silber, Buchfuher, Earley, Winkelman or others you know of.

If you’ve seen an expert in the RLS field, I’m wondering which physician you would recommend and why? My primary concern is flexibility of care i.e.) someone who is liberal in their care, takes the patient‘s experiences seriously and is willing to push the envelope a little as needed. For example, I’d like to be on a rotating schedule of medications that reduces the chances of building tolerance or developing augmentation.

Thank you in advance.

[LotteM]

Ircam, if you are in the US, get to the rls.org. Many (good) things are available, far mire when you are a member. Something like 30-40$ annually. They have quality care centres. But also, webinars for subscribers, meaning you can listen to presentations by their many associated researchers and medical doctors. That may help to find obe that suits you. But some doctors may not work out of state? That can be a problem when you need prescription medicines. And then maybe that is not an issue for you.

Hope someone with 'local' (US) experience chimes in. It may help if you list what state you live in. Nearby is better?

[WideBody]

With all due respect, I thinking your looking for a solution before finding the cause. I don't know enough about you, but I am sure the Good doctors will check your blood levels. Gather all the information, how long have you had this, do others in your family report the same issues. etc.

I understand the need for relief. Some medication can be temporary to get through what ever level you are at. I think that is best discussed with you and your doctor after all the tests.

Good luck with your new Doctor.

[Heavyd65]

Your the first person or doctor as you claim that makes any sense. I’ve had RLS for over 25 years. I’ve had years of little sleep because I followed the doctor’s orders. Now that I manage my own symptoms. I sleep and function normally. I take Red Kratom at bedtime (6) capsules…and a small dose of Pramiprexel (.25mg) Kratom works very fast and the Pramiprexel kicks in for the later part. I do this about two weeks and than I switch to 15 mg of oxycodone before bed. No Pramiprexel. Guess what? Works great and no doctor prescribes me big Pharma meds!

[ircam2112 in reply to Heavyd65]

Not sure what you mean by “first person or first doctor to make any sense”?Could you provide me some info on where you get the red kratom from? I did try it once but had severe nausea the first time I used it. It was likely contaminated with something so need to ind a reliable source. Have you had any GI issues with Kratom? It doesn’t sound like it as you’ve been taking it a while.

[Lolly53]

I live in Texas. My neurologist is one of the leading RLS doctors in the country. He has published numerous articles through Mayo. I can’t begin to tell you the difference he made in my life in my 35 years with RLS. For over five years now I take a nightly very low dose of Methadone and I am practically RLS free with only occasional breakthrough. The doctor is William Ondo in Houston. Best of luck!

[ircam2112 in reply to Lolly53]

Thanks for the reply. I’m still deciding on a provider. I think I recognize his name from studies. I know that this is difficult to answer but, if the current Neupro I’m on now doesn’t last long term, do you think he would consider an opioids + benzodiazepine combination? And, to be more general, his general openness to try unconventional methods, to go against the grain a little and his response to patients who are asking him to e.g. there is a “black box” FDA warning about this combo - as well as gabapentinoids + opioids - but if anyone has taken the time to actually read the warning and the studies that it’s based on, they’ll quickly and consistently realize that the warning is politically-motivated to address the opioid epidemic I.e.) the more medications they can “show” do not play nice with opioids, the fewer patients will be prescribed opioids. The FDA has done the same with Gabapentin and Pregabalin which puts us all in a difficult position since for refractory RLS, a combination is recommended by Mayo Algorithm. The number of people who died from these combinations between 2012 and 2018 was 4 in the US….yes 4. That’s over 10x less than the number of people who died by lightning over the same period - 400+. I’m going to write a post about it as I imagine others are running into this issue as well.

Again, difficult to answer but do you have a sense as to how he would respond to this type of approach by a patient - basically, can we look at the actual danger?

[Lolly53]

I cannot speak for Dr. Ondo. But I do know that he treats hundreds of RLS patients and is one of the most knowledgeable physicians in the world in regard to this disorder. I would trust his opinions for sure.