RLS doctor

[Ksapurple]

Does anyone know of an RLS expert at the Mayo Clinic in Phoenix, AZ ?

Thank you.

Ksapurple

[SueJohnson]

Josana13 indicated she was going there so you might want to message her (click on the Chat icon at the top of this page) and ask about her experience. Please then reply here and let me know since I keep a list of doctors and one's experience with them. You want someone willing to prescribe opioids if you need them.

Other names I have:

Dr Moguel-Cobos at Barrow Neurological Institute in Phoenix, Arizona - prescribed methadone - also prescribed pregabalin rec by Wickone so you could also message her.

Dr Mark Buchfuhrer is another top doctor 11480 Brookshire Ave #108 Downey, CA 90241. [phone]. Although in California you only have to see him in person once and can do telehealth appointments. If you need an opioid you will have to see him every 6 months.

Dr Joseph "Andy" Berkowski - Ann Arbor, MI who is a top doctor in the US. He is associated with the RLS Foundation. He does teleconference in Arizona, but does not take medicare nor any insurance. If you can afford it he is the best. However although Arizona will fill prescriptions from other states I am not sure if they would fill one from Michigan but you could check with your pharmacist.

Barrow Institute in Phoenix, Arizona. It might take awhile to be accepted. I was a patient with the Movement Disorder Clinic, recommended by vikkitennis This may be a duplicate of the one above.

I have a couple other names but the above should be enough.

[Arizonajan in reply to SueJohnson]

I did go to the movement disorder clinic at Mayo in Phoenix and was sadly disappointed. Nothing new to try. Same meds, Ropinerole suggested. No suggestions, no naturopathic alternatives suggested. Of course very disappointed.

[SueJohnson in reply to Arizonajan]

which doctor did you see?

[Arizonajan in reply to SueJohnson]

Sue it was 5 years ago and don’t recall now

[SueJohnson in reply to Arizonajan]

OK

[fritzb43 in reply to Arizonajan]

I seriously doubt that there are any "naturopathic alternatives" for RLS, or any "natural" method for treating this disorder, for that matter. If there were, the entire RLS universe would know about it and would be using it effectively to the exclusion of Rx meds.

That is not happening.

[SueJohnson]

You don't give any information on whether you are on any medicine, so I will just give you the information I would give a new patient.

Have you had your ferritin checked? If so what was it? If not this is the first thing that should be done for RLS.

When you see your doctor ask for a full iron panel. Stop taking any iron supplements including in a multivitamin 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. You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20% and 45%. If your ferritin is less than 100 or your transferrin saturation is not between 20% and 45% post back here and we can give you some advice.

Above all don't let your doctor prescribe a dopamine agonist like ropinirole (requip), Neupro patch (Rotigotine) or pramipexole (mirapex). They used to be the first line treatment for RLS, but no longer are because of the danger of augmentation. This is especially important if you see go to the Barrows Institute since they treat Parkinson's which is treated by dopamine agonists.

Instead ask your doctor to prescribe gabapentin or pregabalin. (Pregabalin is more expensive than gabapentin in the US.) Beginning dose is usually 300 mg gabapentin (75 mg pregabalin) [If you are over 65 and susceptible to falls beginning dose is 100 mg (50 mg pregabalin).] It will take 3 weeks before it is fully effective. 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 to 2 hours before bedtime as the peak plasma level is 2 hours. 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 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. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."

If you take magnesium even in a multivitamin, don't take it within 3 hours of taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and don't take calcium nor calcium-rich foods within 2 hours for the same reason (not sure about pregabalin). 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 up-to-date on it at Https://mayoclinicproceedings.org/a...

Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium, foods that cause inflammation, foods high in glutamate, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, electrolyte imbalance, melatonin, Monosodium Glutamate (MSG), collagen supplements, eating late at night, stress and vigorous exercise.

Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennell, low oxalate diet, a low-inflammatory 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, applying a topical magnesium lotion or spray, doing a magnesium salts soak (epsom salts), vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, playing and listening to music, creative hobbies, meditation and yoga.

Many medicines and OTC supplements can make RLS worse. If you are taking any I may be able to provide a safe alternative.

By the way it would really help us to give you advice if you would indicate on your profile your gender.

[Arizonajan in reply to SueJohnson]

hi Sue. Actually I am a nurse practitioner in Canada and the US. I have done it all! I do know all u have suggested. Thank u: Gabapentin did not work for me. I have actually had Fe IV infusions and my iron levels r all normal, I don’t drink, I exercise, have tried weighted blanket and grounding sheet. U name the med and I have tried it suggested by neurologists.

What I am being maintained in is 0.25 pramiprexole and for many many years with Tramadol when they r out of control . And doing ok with no augmentation:

Generally when I see a specialist They know less than I do. It is an area that many know little about unfortunately.

Certainly sympathetic towards my patients who are also unfortunate to have this.

Thank u for all the help u give us!

[SueJohnson in reply to Arizonajan]

Actually that was for Ksapurple. But have you considered getting off pramipexole and just using tramadol?

[Arizonajan in reply to SueJohnson]

Yes Sue I don’t like to take pramiprexole but don’t like to take Tramadol either. Catch 22 situation

[SueJohnson in reply to Arizonajan]

I remember you said gabapentin didn't work and I may have asked this but did you take it before you were on pramipexole or while you are on pramipexole and how much did you take?

[Arizonajan in reply to SueJohnson]

Yes I tried Gabapentin previously before pramiprexole and nothing , 900 mg daily, felt out of it, groggy , I am an NP and can’t function like that.

[Terriesfullbodyrls]

I live in phx and use Banner sleep. Dr Joyce Lee Innanotti and Dr Kaji have been wonder as I suffer from refractory rls.

[Irmajs in reply to Terriesfullbodyrls]

Will your dr prescribe Buprenorphine? Are you happy with her? Where is she located? I was going to try and go to Dr Moguel-Cobos at Barrow Neurological Institute but I have to send them Dr notes and a referral. Then they decide if they will see me. 🤷🏼‍♀️ thanks!

[Terriesfullbodyrls in reply to Irmajs]

I am on tramadol with good results. Plus a sleeping pill. I was recommended to them from my neurologist. The appointments are via tel a visit. Think the main office is located in downtown phx where sleep lab is. They have taken the time to listen as I have been through dozens looking for someone who understands and gets this nightmare.

[Irmajs in reply to Terriesfullbodyrls]

Thank you! What dosage of tramadol are you on? The neurologist, Dr Win Toe, I was seeing that quit has me on 50 mg to start which isn’t working so I take over 135mg of CBD and whatever else I can find to calm things down. I was to see Dr Toe the week before he disappeared. He was in Mesa and also was affiliated with Banner. Glad to hear she will do a tel a visit as downtown is so far for me. Did you have to have a referral?

Thank you again.

Irma

[Irmajs in reply to Terriesfullbodyrls]

I have an appt with Dr Joyce Lee Innanotti March ‘25. Can’t wait. I’m miserable. I was approved to see her quickly because my Mesa doctor that left was with Banner.

[Terriesfullbodyrls in reply to Irmajs]

It took me 3months to see her. She had suffered from RLS when she was pregnant. Her partner is Dr Kaji. He is great so don't be surprised if you see or talk with him in 6 months. Maybe we should get a RLS luncheon bunch. I am thrilled for you. Its sad what we go through just for a decent Dr that gets it.

[Irmajs in reply to Terriesfullbodyrls]

So true. Hard to find a good Dr for sure. Thank you for your response. I really appreciate the support. An RLS lunch group sounds great but it would be awhile before I could participate. My husband is terminally ill and for now he takes all my time.

[Wickone]

I have been prescribed Methadone by Az Pain Medicine Clinic, Catherine Lambert, PA in Phoenix, AZ. She is not a RLS specialist. I also go to Barrow’s Neurological Institute. It took me a year to get appointment. Good luck!

[Irmajs in reply to Wickone]

I have heard that! May try some other avenues before Barrow’s. I’ve been to so many neurologists & drs for this, it would take me so long to pull everything together and they won’t even make an appt until you have everything and they decide your worthy of one.

[Arizonajan]

appt needs to b made thru the movement disorders clinic. When making appt tell scheduler u need to see dr about RLS