Hello,
I've just been messaging Dr. Mark Buchfuhrer re: my severe Pramipexole augmentastion.. He has replied and informed me that my situation is very treatable with a very good prognosis. Unfortunately, Dr. Buchfuhrer is unable to treat me as I live out of state in Florida. He suggested I find a specialist in state. So...
Does anyone have and experience of an RLS from the SE Florida area? I desperately need to find someone to help me.
Thank you. 🙏
Searching rls.org...Closest is Emory in Atlanta GA. Searching Emory, many do telehealth appointments.
rls.org/treatment/quality-c...
providers.emoryhealthcare.o...
Also try this for providers in Florida...
rls.org/treatment/find-a-he...
So grateful. Thank you so much.
You asked before about my withdrawal. I started on Mirapex more than 20 years ago and then supplemented that with Sinemet. I went thru at least 10 different neurologists all within the same UPMC Neurology group - all the while with continued increases in both drugs. Three years ago my doctor said I was having severe augmentation and needed to come off of the Mirapex - cold turkey. I argued with her repeatedly but finally gave in and spent 17 days and night of hell with no sleep and leg swells that were brutal. After that was over she then told me that if the Sinemet could not control my RLS completely (which it did not and I knew it would not) she recommended that I start on a low dose of Mirapex again. Finally, after almost dying from Covid on 12/25/20 I asked my newly acquired lung specialist to help me get into the neurologist that I felt could help me and he is doing just that. He told me that Mirapex and Sinemet will never help me because they both cause augmentation and they will never be good for me. I started on Methadone earlier this year and he slowly weaned me off of Sinemet - a 1/4 tablet decrease every week. I am completely off of Sinemet and two weeks ago took my last 1/4 tab of Mirapex. I have had some good and some not so good nights and days. I took my last 1/4 tab of Mirapex and if I continue along this route I think I will be able to live with the occasional breakthrus that are so much better than what I was dealing with previously.
I live in Orlando and I go to Gainsville to a neurologist at UF Health. It's about 2 hours north of me. I do know there are other UF Health facilities but not sure if one is closer to you than Gainsville is.
I'd just Google UF Health Neurologist closest to me and go from there.
I have a great doctor. She helped me with Tramadol augmentation and I've been nearly symptom free from over a year and a half.
So happy you have a resolution to your RLS. Are you taking ANY medication for RLS or do you no longer need it?
Yes, I'm now taking Methadone. I'm taking 5mg in the morning and 7.5 before bed.
I've been taking it since April of 2021 and the difference is amazing. I went from having symptoms in my entire body to rarely having any. And when I do get anything it's just in my calves.
My neurologist always spends 30 to 45 minutes with me each visit. She asks so many questions about anything thats going on so she can give me the best treatment that she can. Just feeling like someone is actually listening to me has been such a difference from any other Dr I've had.
It's definitely worth the 2 hour drive every three months to see her.
I hope you stay with this hurricane that's coming!
Such a great resolution to your RLS. And I agree - to feel someone's support and validation is so encouraging.
Ive only starting my Pramipexole withdrawl so I'm dreading what's to come. I'm trying to find a doctor a bit nearer to me - fingers crossed. 🤞
I didn't have a hard switching over from Tramadol to Methadone. She actually had me come off the Tramadol very slowly. I went down 1/2 a 100mg tablet every two weeks. And started at 2.5mg of the tramadol and went up by 2.5 until I got to 10mg a day total. If I'm remembering correctly I think she had me start taking the one time at night for a week before she had me start lowering the Tramadol. Then it all stayed the same for another week then she upped the methadone again and didn't lower the tramadol for that week. It took several weeks but I didn't have any withdrawals from stopping the Tramadol.
A few months ago she added about 2.5mg if the Methadone at night as I was getting some breakthrough symptoms.
So I said ahi off that to say that I see others post a lot that a low dose opiate can help a lot with three symptoms of stopping DA's.
I have all my fingers and toes crossed that you find an amazing doctor who can help you through the best way possible.
🤞🏼🤞🏼🤞🏼🤞🏼🤞🏼🤞🏼🤞🏼
alternate between pramipexole and ropinerole. Works for me. Had RLS for 57 Years. Good luck.
alternate between pramipexole and ropinerole once one stops working go onto other. Discovered by accident. My pharmacy had run out of ropinerole so i had pramipexole had to have something as my RLS was out of control. I have been free of RLS for 3 months, after a lifetime of suffering. Good luck
finding a doctor who prescribes opioid for RLS
Is there a specialist in the uk for RLS?
Found a good RLS specialist (neurology consultant) in the North West of UK 
Looking for RLS specialist in New York
Seeing RLS specialist neurologist tomorrow
