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what other type of Dr treats Severe Refractory RLS?

I have severe refractory RLS. Began when I was 17 after an emergency surgery. by 19 the RLS quickly progressed into a 24/7 nightmare of extreme discomfort and no sleeping. It feels as if it begins in tailbone and down my thighs, & ends at my knees. It's an antsy deep dull discomfort that I can't ever seem to properly explain. In the past I have punched my legs and wished to have my legs removed.
I tried every supplement, home remedy, and life style change that my family and I could find on RLS. I tried every RLS medicine available which either didn't help or made my legs worse. Neurologist checked my nerves and they were fine. Sleep doctor had me do a sleep study, which was agonizing. he concluded that he'd never treated nor witnessed RLS this severe. He started me on hydrocodone, and for the first time in years I actually slept. My daily quality of life was back to normal. After nearly a year the medicine was not working as it once had. This is when he spoke with an out of state Dr whom treated severe RLS. He informed my Dr. that my case would need to be treated with a last resort medication... methadone. I didn't know much about it. I trusted him completely and a normal life outweighed the future dependence my body would end up having from being on this medicine long term. I knew that if this medicine worked, it would be very long term, or until a revolutionary breakthrough treatment was available I felt completely normal on the medicine. 5 years later I never had to increase dosage not even once. I nearly forgot the feeling of the agonizing discomfort that had once consumed my teen-early 20s years. I'm living a somewhat normal life of a 29 year old. Until I received a horrible phone call from my sleep Dr. informing me that the board does not want him prescribing methadone anymore. So he wrote a prescription for the amount I would normally take in 12 days and the nurse said "ween yourself or try to find a Dr. who can continue long term methadone treatment".
Nearly forgetting what life was like prior to the medicine, I thought I could handle it and began tapering my doses. I am now at half my normal dose, my tailbone and pelvic area became uneasy with that familiar restless agonizing discomfort. As I TRIED to sleep that night, the uncomfortable restlessness made its way to my thighs. I refrained from taking my normal dose because that would mean less time to figure out my next steps. When it comes time for my last dose, I know what's to come. My life will be demoted back to a forceful restless, 24/7 sleepless torture.
I'm already miserable and have gone 3 nights with no sleep, and that's WITH the decreased doses. I pray I find the Dr I need before finding out how much worse it is without the treatment completely. That being said, what kind of Dr should i be looking for? In the beginning I saw a neurologist who then passed me on to the sleep specialist whom couldn't treat me long term anymore. So what other type of Dr treats RLS?
I live in Lake Charles, LA and would prefer NOT to have to travel to Houston, tx due to my inflexible job.
Any suggestions or recommendations will be very much appreciated.
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replied June 30th, 2016
RLS treatment
I hope you have found your way to a doctor who is willing to continue your treatment. If you haven't yet found help, you might try a pain clinic or pain management specialist. Perhaps your doctor could refer you...
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replied July 28th, 2016
Have you tried taking a magnesium supplement. Magnesium Citrate or Chelated magnesium is more easily absorbed than that sold at your local pharmacy and can be bought online and in some vitamin shops.
Many people have had success w RLS after taking magnesium for a month or two. I've taken methadone and have done a cold turkey removal from it!! It's terrible. But you'll b ok. He can prescribe you other medications to help u through the withdrawal period...
Blood tests cannot give u a proper level of magnesium as its stored in your bones.
Give it a try, you don't have anything to lose but a horrible RLS problem!!
Start slow and build up to a large dose. Look online for Suggested dosages for your specific symptoms. Good luck!
I'm feeling miserable for you!!
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replied July 28th, 2016
How are you btw??
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