Kakally has mentioned this. It would be a very useful tool to use to establish if iron infusions would help RLS. As we are finding out, iron infusions help 60% buy make little difference to others. If the scan shows low brain iron, infusions could be first line treatment.However, I imagine the cost of the scan will make it too expensive for most health care systems.
Yes, £750-£1000 is currently fairly typical for a private iron infusion in the UK. As in the NHS, they mostly state that infusions are for anaemia: treatment costs include a consultation before treatment, and I hope that they would not have a problem performing an infusion for RLS with our supposedly 'normal' iron measurements. Joolsg ?
Doh! Re-reading I can see that....The guide price for an MRI at the Manor Hospital in Oxford for pre-assessment, scan and post-discharge care is £565.
(I had several scans, two colonoscopies, a hernia repair, 20 sessions of radiotherapy, months of hormone treatment, eight reviews with consultants etc etc in 2021 on the NHS: I hate to think what that would have cost privately!)
How absolutely fascinating. I was told, years ago, that RLS sufferers had something in the brain that was off kilter but it was all a bit vague but since those days research has moved on apace.
Cranial ultrasonography (i.e. ultrasound examination) would be much cheaper than MRI, but not done in any centres in U.K. (for RLS) at present. I’ve been trying to discuss this and get interest for a research project for RLS for about 3 years but with no joy so far….
Our local ‘Patient Blood Management Unit’ senior technician found that many of his patients who came regularly every 3 months or so for their i-v iron for numerous conditions , (such as gastrointestinal slow bleeding or haematological conditions) used to tell him anecdotally that every time they had their i-v iron it made their annoying RLS go away…. MAGIC.. . It was he who was fascinated and interested about my keenness to have i-v iron because of the theory of Nordlander, Allen, Earley etc.
So I had contacted (the most wonderful and compassionate) Richard Allen who helped me persuade the local consultant Haematologist to have my first dose back in 2019.
I am fortunate to come into the 60% of ‘iron responders’. I have been fighting and endeavouring to do work on RLS since as Joolsg knows
I have required 4 infusions of ferric carboxymaltose in total in the past 4 years, every time my ferritin falls below 480, then my symptoms return significantly. I have fought and won to have further infusions with my local (new to me) senior neurologist who kindly listened and read about the Mayo algorithm and the need for alteration of one sentence in it, or at least reconsideration of that sentence, that I have requested in my letter to the Journal of Sleep Disorders and Management published 2023.
‘The need to establish an evidence-based limit value for serum ferritin in the use of intravenous iron in the treatment of RLS’
Though only 60% may get benefit, at least if done as first line treatment, then you find out quickly who may or may not be helped and modify your treatment accordingly and not waste months or years on oral iron that may only help a few get their ferritin high enough to gain benefit
I am fairly sure that Prof. Earley thinks that RLS patients have a personal threshold below which their symptoms worsen significantly. I agree with this as I can guess my ferritin level reasonably accurately from how my symptoms are….
4-6 weeks with a bit of probable gradual improvement before that, though I think I kept hoping and imagining it was improving earlier Good luck with yours . Did you have 1gm of ferric carboxymaltose or less or another formulation?.
I wasn't told the formulation. When I asked my Dr she said she didn't know! Again I'm desperate. Drs (who prescribed Gabapentin and Pregabalin which had caused me sickness.)
In Wales Drs cannot Px Tramadol for me so I've been purchasing from online for a few months but they are not as affective as they were. The nasty pins and needles continue but it gives me a few hours 3 6hrs pm and 11-1 hrs am. No sleep but my legs stop the tight griping for that time and I can rest a little. The no sleep is telling on me. My health is deteriorating fast.
I was diagnosed 2017. I'm 81 yrs and haven't been able to holiday or visit for 12 yrs so I was praying I might find peace and some enjoyment in these last few months. I hope there's time for the infusion will do what I need.
Thank you for reading my message.
I hope you've found relief in some way. God bless X
Oh thankyou so much for putting this video on here,I believe it's the first time I've seen a professional person talk and describe RLS so well.I wonder if gp's are aware of this video,I certainly don't believe so.Ive been anemic all my life but when I have bloods tested I'm told they are normal,even my Grandaughter who is currently studying medicine said RLS is not mentioned,so that makes me feel like I'm a nuisance each time I try to get through to my gp just how this disease is affecting my life thankyou again.
I would take my iPad pay for a double appointment and tell your doctor you have paid for extra time so he could have time watch it . I always put my GP on the spot because he can’t refuse if I have paid him so he has time to do it 😂
I'm in the North of Ireland so we have the NHS therefore I don't pay🙏but if I believed that anyone near me could definitely help with this awful disease I would pay.can I please apologise for saying that its the first time I've heard a professional speak on the subject as I'm sure there are professional people on this Forum who have informed and advised us so much.
Hi, I can't get the link to work for some reason so I'd be grateful if someone could tell theme the exact title of the video so I can search for it on youtube please?
But even more importantly, have you heard about Dipyridamole? It seems in studying the brains of RLS sufferers, low iron creates low adenosine levels in our brains. Dipyridamole is an ENT1/2 blocker that increases intercellular adenosine. It completely eliminates my RLS without any significant side effects. Especially when compared to gabapentin, pregabalin or DA drugs. That is even a double blind study.
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How I cope now with RLS 
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Ropinirole
