Research in Australia: rls.org.au... - Restless Legs Syn...

Restless Legs Syndrome

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Research in Australia

TheDancer profile image
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rls.org.au/latest_news_item...

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TheDancer profile image
TheDancer
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I saw this article a while back, and its very good news that they are still doing studies. Until this study had been done on people using MRI scans and actually looking at live brains, study on brains with RLS, had always been where donated brains were used after people had died.

Lets hope the researchers find the clue to how this syndrome works and can fix it...i know a faulty gene has alot to do with it as well..in my non scientifc brain, the faulty gene could be connected to RLS brains being different with the movement part...

in reply to

yes, we saw this a few months ago, but its great news anyway, and i agree with Elisse, research on live brains has got to be better

eileen49 profile image
eileen49

very interesting, at long last someone is looking into it, watch this space !

Wow, finally some good news about research! I have felt for some time the connection between the brain and RLS. Sometimes I feel a 'twitch' of sorts in the brain before an attack and then wish I could turn off a switch to stop the oncoming problem!

It feels just like something in the brain tells the legs to start moving.

Has anyone else been aware of the similar sensations?

in reply to

We know there is a connection between the brain and RLS. Our brains are our control centre if you like.

But cant say i have ever had a twitch in my brain before an attack, just the legs before it happens..,

CathyS profile image
CathyS in reply to

YES YES!! In my "pre-patch" days while delirious from lack of sleep, I was convinced that voodoo was somehow related to RLS! Every time I laid down and started to doze off, I would feel a mild pin prick somewhere. And then it starts. Every single time. My now well-rested brain cracks up when I think of it, but it does sound similar to your 'signal'. I suppose it could be like the aura so many experience indicating an oncoming seizure. My son saw colors before seizures, and was told to lay down when that happened. He managed to ward off seizures on several occasions. Now if we can just figure out how to ward off pending twitches we could make a million!!! I'm pretty sure that laying down thing won't work :-( Using the patch has helped me stop looking for the meanie with the voodoo doll!

jefro profile image
jefro

Hi... as I have only recently found this site I have not commented on it before. I have suffered for many years with RLS and my new GP is very supportive and has done some research on my behalf. I have been taking Ropinirole for about six months and my daily dose hase been up to 3.5mg but I still had twiches and no sleep untill about 4am. Two weeks ago I had to see him about another matter and he said I should have a blood test to see if my iron levels are ok. The test revealed that my hemoglobin levels were a little low but nothing to worry about. I decided to get some iron tablets anyway and on the second day after taking one I felt terrific so much so that I did not even have a twitch in the evening and I slept nine hours without any help from drugs. It has been over a week since then and I have stopped restless legs completely apart from a few twiches when i have sat in one possition for too long. I am taking Ropinirole but only 0.5mg a night just as a back up. Maybe there is something in this Australian study?

in reply to jefro

Its not a good idea to take iron tablets without your doctors instruction, tooooo much iron can cause alot of problems. You can get iron overload.

I would check with your doctor to get his ok.

jefro profile image
jefro

I understand all the problems of having too much iron, but as I could not get an appointment for my GP for several days I went to the chemist and asked the pharmacist for his recomendation and he gave me 14mg iron plus 80mg vitamin C and I take one tablet every 2 days. He said that amount will not cause a problem even if I took it for months and as a footnote, even my stools are not dark.

in reply to jefro

Yes, your pharmacist is probably right, at 14mg it is a small amount, compared to what your doctor would give you. If your ferritin level is below 75 then the normal dose for iron would be 375 three times a day. with VitC to help absorb it.

You are one of the lucky ones, that such a low dose of iron is helping you straight away. Most take the 375 three times a day and it can take them months to up their ferritin level and still not make any difference to their RLS...Me being one of them...

Tiredparent profile image
TiredparentRestless Leg Syndrome

In case it is useful, my GP has told me it is v hard for the body to absorb iron and that eating red meat is the best way (horrible thought but because of the blood!). If you have vitamin C with it, like a glass of juice, it helps the body to absorb it. Apparently this is more effective than tablets.

jefro profile image
jefro

Just to let you know, my ferritin level was normal and only the hemoglobin was slightly low. All I can say, in my case, and we are all different, it is as though I have been re-born. I have not felt so good for probably getting on for ten years due to RLS and about four hours sleep per night when I was working. Now I am retired it got worse because I was not so active due to severe arthritus in my knees. I have had many blood tests over the years for one thing and another but never a HG or ferretin test. I just feel so lucky that I have hopefully and I stress "hopefully" found the root of my problem after all these years. Can I suggest that other sufferers have an iron blood test and see if it is low, whether extra iron will help, as it took me 10 years before I had one.

well ive had blood tests for ferritin levels, and my was at 5, quite low, as i think its now recomended that it should be around 75, so i was given iron tablets for 3 months,got the ferritin levels up, and it didnt do as scrap of good for me, ive had RLS for 43 years, and counting, and never felt anything in my brain, its my legs where i feel it.

jefro, i am pleased you do seem to have found the root of your RLS and i hope your success continues.

I have a question i posted on here where i was asking people if they had a blood test done mostly to get their ferritin level checked.

Thanks for letting us know how things are for you now. :)

Zeldafurbush profile image
Zeldafurbush

AM I READING THIS RIGHT? LAST TIME ANYONES BEEN ON HERE IS A YEAR AGO? FOR HEAVENS SAFKE--DESTROY IT. KEEP A COPY FOR REFERENCE IN A BINDER IN CASE, BUT BE READY FOR SOMTHIN

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