Anyone ever seen this ?

[RC723]

I came across this on Reddit please let me know your thoughts 😊

m.youtube.com/watch?v=PMv-I...(Not working as expected?)

Copy and paste this link on google

[Walmer3463]

Thanks for sharing this video link. It's good to see some information that looks at the core of the problem rather than just drug treatments which are so dicey.

[SueJohnson]

Can you post the link here. I wasn't able to copy it from above.

[ChrisColumbus in reply to SueJohnson]

youtu.be/PMv-IVXihyw(Not working as expected?)

[ChrisColumbus in reply to SueJohnson]

Doesn't appear to be a new tool sciencedirect.com/science/a...

[SueJohnson in reply to ChrisColumbus]

Thank you for the links to the YouTube video and this article.

[RC723 in reply to ChrisColumbus]

oh that sucks I thought it was new 😞

[ChrisColumbus in reply to RC723]

Not a new tool, but not seemingly widely employed to diagnose RLS and not enough people knew about it to ask for it. So well worth posting the video to raise awareness

[RC723 in reply to ChrisColumbus]

the guy in the video is the one who has people using dipyridamole for rls. Unfortunately it didn’t work for myself. My point is, I feel like this guy could be responsible for something big for rls sufferers years down the road 😊 or I can only hope so lol

[99selkies]

Really interesting. Nice to know someone is doing some sort of research on intervention for RLS, rather than drugs

Wonder how to follow this up. Find out where this procedure is offered and by who. Especially in UK as that is where I am

[Joolsg in reply to 99selkies]

Quite a few of us in the UK have managed to get iron infusions. Where are you?

I had mine at St George's in London & asvised someone else on this forum to contact them. She's also had her infusion.

The Royal Cornwall in Truro also do iron infusions of Injectafer for RLS and I know Sheffield hospitals have done it.

You can send all the research papers direct to the haematology department at your local hospital ( I did this) or see a private neurologist who is willing to refer you for infusions. Prof. Matthew Walker at Queen Sq, London has referred patients. Your GP will be very reluctant so do consider approaching the haematology department directly and if they agree, they will ask your GP to send a referral letter.

Many UK neurologists discount the link to brain iron so ask before you see them to avoid wasting your time.

The NHS and NICE CKS information on RLS mentions raising serum ferritin to 75 but many RLS patients need much higher levels to get enough iron through to the brain. Serum ferritin levels of over 300 are often required.

[99selkies in reply to Joolsg]

I live in the Orkney Islands off the Northern coast of Scotland. If there is anything in Edinburgh Glasgow or Aberdeen , I could get there easily

I can get to England too of course, especially London. Just costs more

[Joolsg in reply to 99selkies]

I suggest you write to the haematology department at all those hospitals and attach the links below. Ask if they will give you an Injectafer infusion as it resolves 60% of cases.

If you're on dopaminergic meds like Ropinirole, Pramipexole or the Neupro Patch, it would be better to get off them first if they're causing augmentation as the iron infusion won't really help if your D1 dopamine receptors are over excited. It will just slightly mask the augmentation.

sciencedirect.com/science/a...

sciencedirect.com/science/a...

mayoclinicproceedings.org/a...

ncbi.nlm.nih.gov/pmc/articl...

Prof. Walker could do private phone consultation and refer you to a Scottish hospital nearest to you for the Injectafer infusion.

[Joolsg]

Excellent find. Thanks for sharing. Many of us on here have had the intravenous Injectafer iron infusions and haven't had any improvement.

I always tell people to push for the infusion as the odds are very much in their favour. 60% have dramatic improvement. Great odds for a relatively cheap, quick, safe procedure.

Every time it's mentioned, doctors say it's very risky but I researched and the risk of infusion reaction and iron reaction with Injectafer are low. Serious reactions (anaphylaxis) are less than 0.1% so I think that's a risk worth taking.

injectaferhcp.com/safety-an...

[Hidden]

I had a 5-part regimen of iron infusions (INFeD). My ferritin went up to over 400. I had no results! No abatement. Many people have success, but I guess I'm one of the non-responders. My iron was normal when I started the treatment.

[RC723 in reply to Hidden]

what level was your ferritin before u had the infusion

[Hidden in reply to RC723]

I think it was 80-100, anyway well into the normal range.