Mayo Clinic

[cessna122]

Anyone out there tried Restless legs syndrome care at Mayo Clinic

[SueJohnson]

Are you talking about the one in Rochester, Minnesota?

[cessna122 in reply to SueJohnson]

That would be the closest for me, but looks like most of Mayo Clinics offer this

[SueJohnson in reply to cessna122]

Your best bet is to go to the one in Rochester. Dr. Michael H. Silber is there and is one of the authors of the Mayo Clinic Updated Algorithm on RLS which is the bible on RLS and he is one of the best doctors in the world. I have found that some of the other clinics don't even follow the Updated Algorithm. He also does zoom appointments and will work with your local doctor.

[cessna122 in reply to SueJohnson]

Thank You for the information. I will check into my insurance

[Nikos64]

I’m a patient at mayo and I will unequivocally recommend it! The doctors are top notch and thorough. The sleep center is state of the art and the support staff is helpful. I will also state that you cannot do better than Mayo!

My sleep doctor left no stone unturned and found that I have obstructive sleep apnea and strongly encouraged me to lose weight. I also required a CPAP device and after an adjustment period found it significantly improved the quality of my sleep. I exercise 5 days a week and still cannot lose weight due to being prediabetic So he also referred me to an endocrinologist.

For me, Mayo is a one stop place .. my GP and sleep specialist are there. All the doctors I encountered there are the leaders in their fields

In Jacksonville I am seeing Doctor Joseph Cheung, a sleep specialist. Super intelligent doctor !

Also, I can strongly recommend the University of Chicago Medical center.

[Legsgivenopeace in reply to Nikos64]

If you are pre-diabetic and wanting/needing to lose weight, check out Obesity Code by Jason Fung MD. Intermittent Fasting has reversed and resolved Type 2 diabetes under his recommendations. I started using the intermittent fasting method almost 2 years ago and have never before had this kind of success at losing weight and then keeping my weight in one place. He also has a number of podcasts available on YouTube.

[Nikos64 in reply to Legsgivenopeace]

Thank you!

I will check it out!

[Pipsee22]

I did a zoom with Dr. Lipford and she was very thorough. Since my iron levels were not abnormal there wasn’t anything changed there. I use a low dose of ropinirole. She did have some suggestions to try. I would recommend going to Mayo (Rochester). I also consider it a one stop shop.

[yohlense]

I went to Mayo in Rochester years ago for RLS and at that time there wasn't much information out there. They did say it is in the ganglia of the brain, right next to where Parkinson's is. At that time they said it wouldn't progress into Parkinson's, however I am on Ropinirole that is for Parkinson's and have been for years. They told me if I was getting about 70% effectiveness from the Requip that was as good as they expected. I am trying to get off of the Requip and it is difficult. Have to do a step down approach. I do take mineral supplements and exercise. But now I've heard they say it will progress into Parkinsons.

[SueJohnson in reply to yohlense]

The American Parkinson Disease Association reports that the majority of people with RLS do not develop Parkinson's Disease so I wouldn't worry about that. Ropinirole is also used unfortunately for RLS.

You probably know this but just in case you don't: To come off ropinirole, reduce by .25 mg every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount. Wait until the increased symptoms from each reduction has settled before going to the next one. If that is still too much to reduce, you can get an inexpensive jewelry scale that measures down to .01 gram from Amazon ($11 in the US) and shave off a bit of the tablet and measure it. Then reduce by that amount every 2 weeks.

You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.

Dopamine agonists like ropinirole are no longer the first line treatment for RLS. Gabapentin or pregabalin is. (Pregabalin is more expensive than gabapentin in the US.) The beginning dose is usually 300 mg gabapentin (75 mg pregabalin). Start it 3 weeks before you are off ropinirole although it won't be fully effective until you are off it for several weeks. After that increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. (You don't need to split the doses with pregabalin) Most of the side effects of gabapentin or pregabalin will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and if you take calcium don't take it within 2 hours for the same reason (not sure about pregabalin). According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin) daily."

Have you had your ferritin checked? If so what was it? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not ask your doctor for a full iron panel. Stop taking any iron supplements 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. Have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. If your ferritin is less than 100 or your transferrin saturation is less than 20 ask for an iron infusion to quickly bring it up as this will help your withdrawal. If you can't get an infusion, let us know and we can advise you further. Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it at Https://mayoclinicproceedings.org/a... As you have found out not all Mayo Clinic doctors follow this advice which they should although ropinirole did use to be the first line treatment for RLS. Hopefully if you are still seeing a doctor at the Mayo Clinic s/he knows better now.

Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, eating late at night, estrogen including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise. Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse

Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.

[yohlense]

Thank you Sue, that was very helpful information. I am following the gradual step down from the Ropinirole, splitting, shaving the doses and trying to find the balance. I am on pregablin for back and hip that has just been prescribe for me and that is why among other reasons I am getting off the ropinirole. I recently moved and have had to find new doctors and they are reluctant to prescrip an opiod, even though I have had them before to help with the RLS. After having this for 30+ years I pretty much know most of my triggers, but sometimes the flair ups are random . The only OTC I take is for RLS and that is Seratame. That seems to help. I also do cross fit and the exercise helps. I don't do the crazy weights and stuff, our class is moderated to more cardio and keeping moving. (over 60). Again thank you.

[VanillaOatMilk]

I see Dr Eric St. Louis at Rochester, MN, Mayo Clinic Sleep Center. He is a neurologist trained in sleep medicine. I like him very much. He, of course, follows the Mayo Clinic RLS guidelines and is currently helping me taper off Neupro patch. I had previously been started on a low dose of pregabalin, but that provider wasn’t comfortable going above 50mg a day! Dr St Louis currently has me on pregabalin 125mg. I might go higher on the pregab, but first I want to get off the Neupro and see how much better I may be without any dopamine agonist.

Because my RLS is atypical (eg, no urge to get up out of bed and muscle achiness doesn’t start until 2-3am during the night, then goes away when I get out of bed in the morning), Dr St. Louis was VERY thorough in his workup so to rule out other possibilities. Other than two visits in the beginning when I need to be there in person to have certain tests or procedures done, I see him via video. Even though I live only 2 hours away from Rochester, the video appts make it so much easier for my follow up appointments.

He also is very willing to work with my (new) local sleep doctor (also a neurologist-trained sleep doc).