Do we know who is doing research or how much research is being done about this AWFUL disease ?

[blacknwhitecat]

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I dont think there is much research going on in the UK. But there is research that goes on in the USA, the latest one about the Glutamate is on here. That is the most recent one i have heard of right now.

Money is a big factor when research needs doing for RLS, Not only that, but as RLS is not considered life threatening, it doesnt get the fundings as other diseases do, as cancer etc.

[blacknwhitecat]

Ah! MONEY.....of course...why didn't I think of that ? !!!!!!!!!!!!!!!

It's not life threatening but it's VERY debilitating & I would question how many people have been driven to suicide or thoughts of such, because of it ?!

Although I do suffer, I luckily suffer a mild form (having read this site!) & find the lil' tablets I can get from Walmart are marvelous for me......it makes me feel so darn helpless for all the bad sufferers !!!!!!!!!

Anyway, all you guys are in my thoughts & prayers.

[Kaarina Administrator in reply to blacknwhitecat]

Good question, and also a good answer from Elisse. Always boils down to lack of finances in the end to enable research and as it is not considered life threatening it is like banging our heads against a brick wall. I am like you, blacknwhitecat, I too have a very mild form of RLS which does go away at times, for which I am eternally grateful and I do not take meds for RLS yet ...... but do for a number of other symptoms. My heart goes out to all those that really suffer with this, all or nearly all the time. I am very interested in what is happening because I do know how awful it can be. That is why I am a member of the charity and this forum.

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I agree, its not life threatening in its self. But can and does lead to people thinking they cant take it anymore. I was unmedicated for 14 months a while back, when i couldnt find a med that i could tolerate. I was a mess some days, crying, and thinking i cant do this anymore. I never got to the point of suicide, but i know people who have got to that point. Sleep deprivation leads to other health issues, depression, heart problems. to name two. You are not living, you are existing. If i didnt take my med i would have RLS 24/7.

Maybe one day the reseachers will get a big break though and work it out and cure us all.

I am not expecting that to happen in my life time.

[CathyS]

My neurologist stated that there is not research ongoing because nobody actually dies from RLS. I came close after dozing off while driving one day though. I don't know if there's research specifically geared toward RLS but we benefit sometimes from research and treatments found for Parkinson's (e.g. the sinemet & the Neupro patch). We need a celebrity and a Walk-a-Thon! The RLS Walk-a-Thon could be done at 3AM

[blacknwhitecat]

I like your sense of humour Cathy, I take sleeping tablets but for George Clooney & RLS even I would get up & walk to raise money !!!!!!!!!!!!!!!!!!

[blacknwhitecat]

I hear ya, secret garden........I bet ol' Obama would do somethin, lickety split if he had it !!!!!!

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You can't die from E.D. (erectile dysfunction) Yet

they have a little blue pill (and others) for that...

Yet cancer is not cured, RLS is hardly even being looked at.

[blacknwhitecat]

Yeah! Yikes.....I s'pose if we knew of all the other diseases people suffer from & there is nothing being done about them cos of the same reasons as RLS, we'd be shocked !

Thinkin' of ya Yikes....'may the bird of paradise fly up yer nose' etc! do you know that song ?