Sue (or any of you who regularly post answers on HealthUnlocked) do you know the names of a couple of neurologists in the Dallas-Ft. Worth area of Texas who are recommended for RLS treatment? I would appreciate any names you can give me. Thanks.
Neurologist in Dallas-Ft. Worth, TX a... - Restless Legs Syn...
Neurologist in Dallas-Ft. Worth, TX area who treats RLS.
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Dr. Henry Raroque Jr. Neurology Seizure & Sleep Clinic 1215 Kinwest Pkwy # 120 Irving, TX 75063 (214) 496-0500.
However you still might want to ask him if he follows the Mayo Clinic Updated Algorithm on RLS and if he prescribes opioids if needed.
But I thought you had an appointment with Dr. Ondo ?
Sue thank you so much for your recommendation of Dr. Raroque Jr. Yes, I did have an appointment with Dr. Ondo. As you know, he is ranked 1st in the state of Texas for his RLS expertise and 3rd in the U.S. My visit was quite thorough, but I have some reservations about his final recommendation. First, I spent about an hour with an associate neurologist who thoroughly went through the history of my RLS "adventure" (recording everything on a computer) and then went through a series of neurological tests focused on my reflex responses and the common "awareness" tests (follow various motions etc.). I suppose I performed relatively well on these tests since the neurologist remarked at the end: " I hope I can do as well when I'm 91." Then Dr. Ondo came in. We went through all the information recorded by the 1st neurologist. Dr. Ondo thought that I was unlikely to respond favorably to gabapentin (or pregabalin) because I had been on pramipexole from 2008 until 2022 and had increased my dosage from 0.25 mg to 1.00 mg over that time. I had posted on this website earlier that my PCP had recommended that I transition from pramipexole to levodopa (Sinemet). Not realizing at the time that I was going from one dopamine agonist to another, I followed his instructions. By the end of the transition I had read several posts on HealthUnlocked as well as the Mayo Clinic algorithm on RLS and realized that pramipexole to levodopa was a mistake.
Dr. Ondo suggested that I go back to pramipexole and try first 2 doeses of 0.25 mg per day. If that doesn't work go to 1 dose of 0.25 mg and 1 of 0.50 mg. As a last resort, he suggested 2 doses of 0.5 mg. Of course that would take me back to where I was when I transitioned to levodopa. He HINTED (no firm commitment) that if that didn't work out, he would recommend an opioid. He also wanted me to do another blood test before I left Houston Methodist, and, because I was pressed for time to get back to the airport for my flight back to Dallas-Ft. Worth, I really didn't have much time to think about his recommendation and discuss it with him.
The bottom line is that I do question his recommendation. I really think that at this point, I should change to a low-dose opioid. That is the reason for my request for a neurologist in the Dallas-Ft. Worth area. BTW, there are several competent neurologist in the Movement Disorder group at UT-Southwestern in Dallas, but getting an appointment with one is a about a 2-year wait.
I would very much appreciate your opinion on what I've written here. Thanks so much for your help and concern. Bob Francis
Given there's a risk of long term damage to your dopamine receptors from a dopamine agonist and that many people eventually suffer from augmentation it seems worth avoiding those risks. DA's do work for some people but if there's an alternative with fewer side effects why wouldn't you try that? E.g. Pregabalin/gabapentin as Sue says or opiods.
Thanks for your response. As I pointed out in my post above, I had been on pramipexole since 2008 when my PCP suggested that I change to levodopa (Sinemet) which I've been on for about a year. Because I had been on DAs so long, Dr. Ondo thought it unlikely that gabapentin would work for me. There are considerable examples of people who have been on a DA for extended periods who aren't successful changing to gabapentin/pregabalin. And as I also said above, I question his advice to go back to pramipexole. I prefer to change to an opioid (buprenorphine, for example). I'm to check in with Dr. Ondo again in a few months. I'll propose that I change to an opioid then.
I agree with you. A low dose opioid seems like the best bet. I'm really surprised he wanted you to go back on pramipexole. By the way it is certainly possible that gabapentin or pregabalin wouldn't work but it is not a sure thing.