Greetings fellow sufferers....this is... - Restless Legs Syn...

Restless Legs Syndrome

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Greetings fellow sufferers....this is my first post. Have had this dreadful affliction for 13 year's. I'm flying out to Johns Hopkins

Denver profile image
7 Replies

Tomorrow to take part in their rls study. Has anyone else taken part in one of these? It requires you to be completely off of meds for 10 days prior to going to the hospital. That has been BRUTAL!!!

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Denver profile image
Denver
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7 Replies
Carol456 profile image
Carol456

Hi Denver, as im UK based, no i cant take part in this, but i do know of two people who have taken part in this, and they have now had better treatment, and coping a lot better with thier RLS. John Hopkin's has a great reputation. Good luck with it, cant wait to hear how it goes for you

ookla profile image
ookla

Wow. Good luck, hope it goes well!

Kaarina profile image
KaarinaAdministrator

Hi Denver

Welcome and thank you for letting us know. I truly wish you well. You are determined being 10 days off your meds. Please let us know how you go on. Hope to hear from you again soon.

Look after yourself

Kaarina

Gannet profile image
Gannet

Best of luck. Looking forward to hearing your story when you get the results etc

connie50 profile image
connie50

hi Denver good luck please let us no how you get on

Hopeless100 profile image
Hopeless100

going to the neurologist for the fist time tomorrow *Fri 20th Dec 2013 It seems that just about every possible drug has been tried and are listed on the California RLS Website. Most posts her seem to be, years old, is the site obsolete?

Best of luck with the docs. .

lkstamps profile image
lkstamps

We went to Johns Hopkins and my husband is in day 5 of withdrawal (his Mirapex was not working anymore). You are right--it is brutal. I wish you the best of luck with good solutions for you regarding this horrible affliction. I told my husband there should be a support system like AA has for people trying to get off the dopamine agonists. I don't feel that I am much help.

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