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How do I find a specialist for RLS?

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Old 12-02-2006, 01:48 PM   #1
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Join Date: Jul 2006
Posts: 28
Abbycakes HB User
How do I find a specialist for RLS?

Hi guys,
I've posted several times, and I am pretty much to the point of tears...nothing works, or it works and makes me depressed. I have tried:
Requip, Neurontin, Mirapex, carb/levo, Percocet, Klonopin, diazapam, and now Methadone. They either make me sick or depressed/anxious. I cannot not be on anything since the creepy-crawlies are sooooo bad, arms and legs, awake and asleep. I feel as though my neurologist is at the end of his ropes, and on top of that, can never work me into his schedule, even though I am a regular patient (I have MS, too).

I am going to ask about Amitripyline, Baclofen, Lyrica/Pregabalin, and Cynbalta...some drugs I have picked up from others' suggestions on this message board.

My big question do I find a specialist? I've had a sleep study I go back to that doctor? Would he know more than my neurologist? I NEED HELP!

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Old 12-02-2006, 06:24 PM   #2
Join Date: Jun 2006
Location: Rocky River, Ohio
Posts: 57
Michelle4 HB User
Re: How do I find a specialist for RLS?


I have rls and fibromyalgia. I called my primary dr for a referral because I thought I may have rls. He sent me to a pulmonary dr. who in turn dx'd my rls and he didnt feel a sleep study was necessary. He gave me requip but I puked a few times so he swithced me to klonopin which helped in the beginning. I didnt want to keep taking because I had to increase the mg's every so often. I currently take cymbalta & I love it, no side effects. My dr that treats my fibro just put me on trazodone for sleep. I am taking the first pill tonight, hope it works.

Maybe call and schedule with a pulmonary dr? seemed to help me. Good Luck


Old 12-04-2006, 04:39 PM   #3
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Join Date: Jul 2006
Posts: 28
Abbycakes HB User
Re: How do I find a specialist for RLS?

Hi Michelle,
Thanks for the info. I called my neurologist's office today, and got the regular "I'll call you back after I grab the doc--he's not with a patient right now" from the nurse. I told her, in tears, that the methadone is turning my into a looney woman, and if I have to, I'll go back on the Requip and put up with the barfing. I also mentioned to her that I have SUPER bad dry mouth because of the methadone he put me on, and since I'm a teacher, it's kind of hard sucking on a water bottle or chewing a piece of gum while teaching.

So, she calls me back and said that the doc said the dry mouth was from the Wellbutrin I'm on...I don't think so! I've been on it for a year, and have never had this problem! Since my students were in the room, I couldn't talk much.

So then...I called her back, in tears, telling her it's NOT the Wellbutrin, it's the methadone and I want her to grab the doc and get an answer from him about my RLS today! They know me, so it really shouldn't be a problem...

It's closes at 4:30...I'm up a creek without a paddle...

I am totally at the end of my rope, and my poor children and husband are their with me...

Old 12-08-2006, 10:19 AM   #4
Join Date: Jun 2006
Location: Rocky River, Ohio
Posts: 57
Michelle4 HB User
Re: How do I find a specialist for RLS?

Hi Abby,

Sorry your in suck a pickle. I would change dr's if you can, they shouldnt treat people like that!. I changed a couple of times in order to find the right one.


Old 12-09-2006, 11:02 AM   #5
Join Date: Dec 2006
Location: VA
Posts: 1
VBird HB User
Re: How do I find a specialist for RLS?

Sorry to tell you this but you have to keep wading through the same type drs. till you find one who listens and something that works for you. I've given up on drs except to write the scipt I ask for. For RLS I have been using Topomax for several years not the perfect but better than all that other crap the last two Dr. were surprised but said if it worked go for it. May be it will help you.

Old 12-10-2006, 10:22 AM   #6
Senior Veteran
Join Date: Jul 2005
Location: Alabama, USA
Posts: 735
sobannon HB User
Re: How do I find a specialist for RLS?

I have found that neurologists office nurses are very weery of anyone who calls and asks for anything. They automatically assume that you are seeking. I called to ask for a refill on my Requip and when I asked for something for my migraine (and I specifically asked for Imitrex), they said they would call me back. Well they never did, they called in prescriptions to my pharmacy, for Requip, Imitrex, and TYLENOL #3!!! I didn't ask for a narcotic, but they assume that is what you want and called it in. I hate my neuro office, but love my doctor. I have to deal with my nurses even though I can't stand them.


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