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Re: Who is your favorite doctor?

Posted: Fri Jun 26, 2020 4:51 pm
by Polar Bear
Beddoc - Well... that was quick. Well done you.
I am feeling very excited for you.

Re: Who is your favorite doctor?

Posted: Tue Jun 30, 2020 4:12 am
by Rebeccalee1991
I’m around Knoxville Tennessee. Does anyone know a good doctor around there??

Re: Who is your favorite doctor?

Posted: Tue Jun 30, 2020 1:20 pm
by Rustsmith
Rebeccalee1991, there is an RLS Foundation Quality Care Clinic at the Vanderbilt Sleep Center in Nashville. That isn't exactly Knoxville, but there are a number of doctors at the QCC who are all experts in the treatment of RLS. Many of us have to travel in order to have access to a doctor who "gets it" when it comes to treating RLS. You may have to wait a number of weeks to get an appointment at a QCC, but it is definitely with the wait and the travel time.

sevierville Tennessee

Posted: Mon Jul 06, 2020 2:43 am
by Rebeccalee1991
Does anyone know a good doctor in Sevierville Tennessee or close to that area? I am really struggling with her Restless leg syndrome it literally drives me crazy at night

Re: Who is your favorite doctor?

Posted: Mon Jul 06, 2020 2:44 am
by Rebeccalee1991
I just saw your response thank you!

Re: Who is your favorite doctor?

Posted: Mon Jul 06, 2020 2:29 pm
by Rebeccalee1991
Does anyone know a doctor that I could make an appointment with through video or call???

Re: Who is your favorite doctor?

Posted: Tue Sep 14, 2021 12:31 am
by boxerdoc
Hi. We are looking for a qualified RLS expert in PA. My 86 yo mother has been treated by her GP with oral DA and experienced augmentation. During the "end" of her time on an oral DA and while she was trying to detox (what an awful experience) she experienced 3 falls (and 3 fractures) from "sleep walking" or "falling asleep while standing up". We consulted (remotely during Covid) with the Hopkins sleep center (with a pulmonologist) and she switched to gabapentin while continuing to decrease the oral DA. She did not tolerate gabapentin (excessive sleepiness) and resorted to using a dopamine agonist patch upon the advice of a neurology PA (who said that the patch would not cause augmentation). The patch worked, until it didn't, and her symptoms worsened. We are trying to find a physician who has experience treating refractory RLS. Hopkins (the part of Hopkins with the neurologists who have expertise in RLS) will NOT accept patients who do not live in MD (this was a complete surprise to me...how can they be a world-renowned RLS center if they don't see patients who live out of state??). We could get an appointment with the Hopkins pulmonary guy - but he can't prescribe medications for out-of-state patients (so the prescribing falls to her GP, who is very cautious). The GP was willing to prescribe Tylenol/codeine (which helps with the deep leg pain but not the restless symptoms or actually sleeping). Mom can sleep a bit better with hydrocodone (prescribed for one of the fractures), but this drug leads to more sleep walking (clearly to be avoided as she does not want to fall again). I see that there are numerous neurologists at Penn (in Phila) but have no knowledge of any of them. If anyone has a recommendation for an RLS expert in Pennsylvania we would really appreciate it. It is getting to be quite urgent, as she is sleeping less than 2 hours a night. Tonight she will try valium (recommended by the neurology PA and prescribed for her by the GP) - no idea if this will help or not. She does have caregivers staying with her overnight (in case she sleep walks) but we really need a better long-term relationship with a qualified RLS expert. Thanks!

Re: Who is your favorite doctor?

Posted: Tue Sep 14, 2021 1:35 pm
by Rustsmith
I do not have any personal experience with doctors in PA. So I asked a friend who lives SW of Pittsburgh and he offer the following suggestions:

Allegheny Neurological Associates - Dr Susan Baser
Univ. of Pittsburgh Medical Center's Comprehensive Movement Disorders Center

I hope that helps.

Re: Who is your favorite doctor?

Posted: Wed Sep 29, 2021 4:16 am
by badnights
@boxerdoc please tell your mom to be careful with the valium. Any sedative used with untreated WED/RLS can cause falls - - because her brain is asleep but awake, asleep from the drug but awake from the WED/RLS.No sleeping pill can overcome the urges of WED/RLS to move.

My heart is bleeding for your poor mom, the agony she has been going through is indescribable. What an especial horror for an 86 yr old! Please continue to be the ally she needs in this terrible time she is going though. I know it's not easy for you either, so I hope you can find her someone who can get her off the DAs and onto something safe.

Dr. Buchfuhrer in Downey CA sees out of state patients and I think will even prescribe? You could email him at somno@verizon.net with the details of your mother's situation as you have provided them here. Dr. B is a very nice man who takes the time to reply to emails from desperate WED/RLS patients. In fact, he's almost unbelievable. He will give you some kind of advice.

Re: Who is your favorite doctor?

Posted: Mon Sep 26, 2022 1:06 am
by XWelcome
A neurologist loated in the villages, Florida who treats severe RLS and also seizures. I am on my 2nd Neurologist who does not call me back aftershe took me off of Tramadol, which was working wonderfully until it didn't. She had me ge off all at once which made me feel like I had the flu for a few weeks. I increased my medical mj and am basically treating myself. Just started accupuncture. I have been on Ropinirole since 2015, 7 years. I got off of Gabapentin by my self since i was having trouble breathing. I tried 3 times before i got off. I have looked up getting off of ropinrole by my self but i am afraid. If I got rid of ropinirole I would be taking nothing for RLS but MJ. Everything i read about ropinrole is not a good for RLS, makes it worse. I haven't slept since i got off of tramadol. The lack of sleep is difficult as my husband is in hospice and i broke my arm and my aide who helps me take care of my husband got dismissed from the agency for stealing from agency not me. I have been taking care of my husband for 2-3 years. For the first time i am starting to get depressed. I need to find a neurologist who won,t give up. Right now MJ is my best friend.

Re: Who is your favorite doctor?

Posted: Mon Sep 26, 2022 1:06 am
by XWelcome
A neurologist loated in the villages, Florida who treats severe RLS and also seizures. I am on my 2nd Neurologist who does not call me back aftershe took me off of Tramadol, which was working wonderfully until it didn't. She had me ge off all at once which made me feel like I had the flu for a few weeks. I increased my medical mj and am basically treating myself. Just started accupuncture. I have been on Ropinirole since 2015, 7 years. I got off of Gabapentin by my self since i was having trouble breathing. I tried 3 times before i got off. I have looked up getting off of ropinrole by my self but i am afraid. If I got rid of ropinirole I would be taking nothing for RLS but MJ. Everything i read about ropinrole is not a good for RLS, makes it worse. I haven't slept since i got off of tramadol. The lack of sleep is difficult as my husband is in hospice and i broke my arm and my aide who helps me take care of my husband got dismissed from the agency for stealing from agency not me. I have been taking care of my husband for 2-3 years. For the first time i am starting to get depressed. I need to find a neurologist who won,t give up. Right now MJ is my best friend.

Re: Who is your favorite doctor?

Posted: Mon Sep 26, 2022 9:17 am
by Polar Bear
XWelcome - You have mentioned how you would like to come off Ropinerole. Just to say that I came off what was a much too high dosage. I did it very slowly but was also taking Codeine and Pregabalin.
It is likely to be very difficult to come off Rop[inerole without the support of another medication.

We don't have legal access to MJ here in the UK. (Though possibly I could find it unofficially by word of mouth).
I doubt it would be sufficient on it's own to control any RLS symptoms given that your symptoms were severe enough to require Ropinerole.

Re: Who is your favorite doctor?

Posted: Tue Dec 13, 2022 9:44 pm
by SquirmingSusan
I talked to a nice person at Mayo Clinic in Rochester, MN, and she informed me that my Medicare Advantage plan does not have a contract with Mayo. Mayo is 90 minutes away and the closest quality care center. I called my insurance customer service, to find out if any of the quality care centers DO have a contract with my insurance. The answer was no, and she referred me to a sleep clinic that turns out to be a dentist who treats apnea.

Next step is to call a patient advocate. I'm also filling out paperwork for a pain clinic near me where I used to get my methadone prescribed. The doctors there were kind and helpful, but it's not optimal to have a doctor who doesn't understand RLS. This is insane.

Re: Who is your favorite doctor?

Posted: Sun Oct 22, 2023 3:01 pm
by sarahpatto
I realize this is an old thread! But is there anyone out there who can give advice on finding a doctor? I did go once to Dr Durphy in Albany, NY. I live in Upstate NY and drove 3 hours to get to an appointment with her but then followed up with telehealth appointments with nurses after that. I didn't end up having a good or helpful rapport with her. (Maybe because I was only able to see her once!) To me, anyway, she conveyed a weariness, like she'd heard it all before which wasn't encouraging to me.

I'm willing to travel - I have a family in Minnesota and have considered getting a referral to the Mayo Clinic but would love the name of someone there or an understanding of it works when I get a referral to their sleep clinic. I have tried various medications but never got up to a dose that worked with me on any of them (I don't like taking drugs so perhaps have not been the ideal patient in that way). I want to find a doctor who will listen, explain and if drugs are what I have to do, help me to get to a dose that will make a difference with my symptoms.

Re: Who is your favorite doctor?

Posted: Sun Oct 22, 2023 11:56 pm
by Rustsmith
See my response to your similar question in another thread.