Interesting Video RLS/Iron: youtube.com... - Restless Legs Syn...
Interesting Video RLS/Iron
I can not believe anyone has commented, this is a crazy good video. Thank you so much for sharing. This is really good stuff and there was more good stuff in the youtube channel.
While many people are aware that rls is often caued by iron deficiency, just supplementing iron is too simplistic, we need to know why the iron levels are low and tackle the causes. I believe that these days the most common cause is inflammation brought on by the consumption of processed food. youtu.be/eqCensiK8Ac
I eat very little processed food but still have severe rls. I've also been on a course of oral iron but it made no difference. 😞
I think I am in the 30 % that does not respond to Iv iron. I had (about Two months ago) a treatment and it didn’t change anything. Once again my levels have dropped below 100 in ferritin but my symptoms are the same no matter if I’m above or below 100
I would love to get the scan he is talking about but would have no idea where or who has it
Has anyone had it done in the USA?
Very difficult to get IV iron in UK. Certainly is for me. Ive raised my Ferritin level by taking oral iron alternate days with effervescent vitamin C
I've never heard of this type of scan. Is it available in the UK? However, it still doesn't tackle the root cause of raising iron levels in the brain.
that is very interesting. Hope it becomes possible to do soon.
Re some otter replies I understood the theory about why iron low in that area is some genetic defect in the transport mechanism of iron into the brain. Then if peripheral iron is raised mire likely that more is allowed into brain. And much harder to raise iron enough via oral route so IV needed & this scan would help to target who has low brain iron & further justify trial of IV in these people? Not everyone who has RLS it seems has low brain iron? That’s what I take from it all anyway
thankyou, for sharing this video,when i see stuff like this i feel that at least someone is taking RLS seriously.He talks about 30%of patients may be resistant to this treatment, i think im 90%resistant to the oral treatments prescribed by my gp as nothing has ever really worked for me.It would be really interesting to know if sufferers are cured with the IV iron and if so is it possible to obtain it privately, i live in the North of Ireland.
I received mine on the NHS in London.
It is possible but you have to be crafty and write direct to the haematology department at the nearest large teaching hospital with the back up research papers.
St George's in London have done at least 2 RLS Injectafer infusions. The Royal Cornwall Hospital in Truro will give Injectafer for RLS and I know hospitals in Sheffield have also done them.
Hi all, yes it’s not easy. I recently had an appointment at the local large teaching hospital haematology dept for another reason & decided to take along the Mayo algorithm in the hope that they might help with Iron.
I’m afraid not a bit of it! The guy said he didn’t have time to read it just then which is fair enough.
I now have been sent a copy of the letter he wrote to my GP which acknowledges the consensus view that iron iv might help - but he doesn’t think it is appropriate to administer at a haematology clinic for a non baematological reason and off licence!
Hope others of you are more successful.
I have an appointment arranged with Prof Walker at Queens square in London ( thank you for the recommendation ). If he suggests iron I’m not sure who I’ll be able to get to administer it - live over 500 miles from London. Just now I’m having another go at oral iron as my Ferritin has dropped to low levels ( Hb ok though )
These folk do make life tricky for us for sure!
The NHS treatment lottery is infuriating. I also have MS and there is a cannabis based drug called Sativex that really helps pain, spasms etc. Certain areas will prescibe on the NHS, others will not.
I live 2 miles away from a friend in a different London Borough. She gets Sativex free on the NHS. My sister and I both live in areas where it is not allowed so we have to pay hundreds a month for private medical cannabis.
We all pay taxes and NI so it's incredibly annoying that health services and drug treatment is still a lottery across the UK.
It's so unfortunate that you're seeking an infusion now as the NHS is really struggling to cope. Covid has tipped everything over the edge.
Thousands of doctors are leaving the NHS and chances of an iron infusion off licence are now much lower than before covid.
Hopefully Prof. Walker can arrange infusion for you at a nearby hospital. Maybe even the one that just refused you!
This case study shows that Royal Cornwall hospital are aware of the benefits.
Not a new test, but I suspect still not widely enough applied to RLS diagnosis sciencedirect.com/science/a...
Thanks for sharing.
The link to low brain iron has been known for ages (and the benefits of Injectafer infusions.)
As usual, it takes decades to filter down.
Most neurologists in the UK still discount the link and it's important to find the right neurologist who will refer for infusions.
The Mayo algorithm now makes it clear that the first step in treatment is raising iron but we know the overwhelming majority of doctors aren't taught the basics of RLS.
My new MD and the neurologist both told me pramipexole was first choice. Hmmmmmph.
It's sadly very common. RLS isn't taught at medical school or during neurology training so most doctors & neurologists don't even know the basics. They just look up RLS in the medications books, Pramipexole and Requip appear & they issue a prescription.
We have to educate them by pointing out the latest research and advice and the Mayo algorithm is very useful for that.
If they're decent doctors, they'll take notice, read the algorithm and follow the advice. If they don't, change doctors.
So many people could be med free if doctors considered iron therapy first and ensured aggravating meds like anti depressants and anti histamines were replaced.
Read all you can as the more you learn, the better you can manage and hopefully resolve your RLS, either through Iron or by taking meds like pregabalin, gabapentin or low dose opioids.
This is awesome and could really benefit my situation! Thank you for sharing!
Update:. I shared this with my neurologist and he is contacting Dr. Barcia-Borreguero for specifics on ordering the test and interpreting results! I have requested in iron infusion for three years. My iron serum levels are normal, but not high enough for the new rls recommendations. Finally progress! Thank you again for sharing this video!
Great, short little video. Thank you for sharing!!
Very interesting, Dic. I do take iron bysglycinate, and I also take digestive enzymes/ hcl, to make sure that anything I take actually gets digested. So far, the thing that has helped --mostly-- has been gaba, tho if I take too much of it it seems to cause too much excitability. This has happened only 3 or 4 times in the last year or so. In which case I stop taking it and switch to taurine and theanine. These work rather well, but not quite as good as gaba. Just why it turns on me, I am not quite sure. But I adjust by switching. When things are going well I often sleep most of the night with no or only very little rls.
I am not suggesting that this could work for everyone. I had rls as a child, on and off, never really bad. Then it would disappear for years. Has gotten more prevalent as I have gotten older. I think there are several possible causes for rls and thus several possible treaments. Finding which one, or which ones, is the key, and, of course, the challenge.
Hi Laura, what time of day do you take the iron?
Generally I take it late evening.
So do I. It provides such complete relief that it would be hard to tell if some other substance helped me unless I stopped the iron. You said the GABA helps you the most but how are you able to tell?
By a challenge of only taking that one supplement before bed. Most nights I wake up once anyway, to use the bathroom, in which case I would take it again. (or half if it is too close to morning.)
Glad you find the iron to help! If it helps, best to continue.
Not sure if you saw this - his supplements include GABA...
hubermanlab.com/sleep-toolk...
Thanks, Dic. I will look into it. Sounds interesting.
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