Restless Legs Syndrome
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Mgt

Mgt

My GP studies it.--- l'm new on this post as l read about restless legs some people are completely different from my symptoms but a few have the same problems as me my mum & my gran had it so l think it's hereditary l'v had it for years as now l'm sixty & l had it bad, l worked nights so it was mostly when l was tiered day or night l would exercise my legs till l was exhausted sometime it was in my arms l would have took pain any day to it the people who have it will know that.l'm lucky enough that one of my gp's studies it & has done for years she put me on medication called Ropinarole it's used for parkinsons disease but parkinsons has nothing to do with restless legs it's because both relate to nerves you would not believe the difference l still have it now & then but just a touch but like all medication it has side effects so have a chat to your gp & go on a low dosage till you get relief if you decide to do it. l watched that programme about it & not onced was it mention so yes l believe we should get it researched as people that don't have it (l don't mean a little irritating that is common) they don't have a clue how bad it gets have a chat with your gp let me know how things are good luck if you try it.

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I think most of us on here know of Ropinerole, either have taken it or are still taking it. I hope your doctor knows not to give you a dose higher than 1mg.

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That's great that you have found relief and a sympathetic Dr.

Long may it last.

At some time in the future it may not appear to work as well as it used to- do not let your Dr increase the dose.

Come back to this site if that ever happens.

Continuing good health to you.

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Hi yes RLS is genetic in around 60%of cases. The genetic type is Primarily RLS as opposed to Secondary RLS. They have identified at least 2 genes which are involved.

Ropinerole works for some people. I couldn't tolerate it made me feel very nauseous.

The dose must be kept very low because of the dangerof augmentation.

I hope that you are able to take it without problems for a long time to come

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i took Ropinerol for 15 years and for most of that it worked very well. I was warned about it causing addictions to things like gambling and shopping. I had to be really strict with myself as the desire to buy stuff I did not want or need was really strong.The drug stopped being so effective and I started having break through symptoms and it started making my RLS worse. I only ever took 1/2 mg except in the first couple of months when I took 1mg but that made me feel nauseous so i went back down to 1/2 and stayed on that.

I joined this site early this year as I did not know what to do . I saw that others had the same problems with Ropinerol so I came off it and changed to different meds. I had 15 good years with Ropinerol for which I am grateful and there is no problem in you continuing to take it. But, if some time in the future you notice you start getting a return or worsening of your RLS symptoms or you start needing to take it earlier in the day or again in the early hours,do not increase the dose, come of it and change to a different class of medication. You can't just stop, you need to come off slowly.

You don't say what dose you are taking but the new max recommended dose is just really 1 mg I think. Someone else on here may know for sure and it may be different in the US ( I am not sure where you are) to the UK. I hope you don't augment and can continue with it indefinitely . All the best

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