I've been under Professor Chaudhuri's RLS Clinic since 2016. I have a phone appointment every 6 months.Today, the registrar said he wants blood tests done.
That is the first time in 7 years that blood tests have been mentioned!
It's a positive step as it may indicate they are now following the Mayo Algorithm and NHS guidance.
Yaaaaaaay! A start indeed… 🤞
Interesting!
That's very good news
Terrific! Brilliant news. Progress? Definitely.
Hello Joolsg. So happy to read your post and it does indeed sound like a step forward in the right direction. Fingers crossed 🤞 for you
wonderful! Thanx for sharing.
(I’ve never had any long term follow up whatsoever after dx at St Thomas … I appreciate knowing what others are getting) xx
Fingers crossed.
Oh that's sounds possitive Joolsg,I suppose it's a long time coming but hopeful none the less, when I talk to my gp regarding my RLS I feel like im being a nuisance,I'm going round in circles ,being prescribed one med then being taken off that and put on something that I was taking a few years ago,gps very obviously know nothing about the syndrome, don't know how I would manage without this forum,good luck to you.
Sounds positive.
Where is the clinic Jools? Xx
King's College Hospital, Denmark Hill, London.
So near me! X
Congratulations, it is about damn time!
Good, positive news indeed
Well hurrah. But I don't understand how blood tests have not been a regular feature of the treatment?
Prof. Chaudhuri's team have always disputed the link to brain iron in the past & Prof. Chaudhuri recently told a patient that iron infusions are too dangerous! They aren't with the new iron formulas.Clearly, some of the team are now reading the research ( or are aware their patients are!).
Hopeful then, but also shocking that it's taken so long.
You don't mention which blood test they want. Given the positive vibe of your post, it means (at least) a full iron panel, including ferritin and transferrin saturation? And did they mention having blood drawn on an empty stomach? And stopping any iron supplementation at least 48h before?
Sorry for being wary.
I haven't seen a copy of the letter they are sending to my GP yet. Hopefully it will be full panel fasting, but, knowing how little most doctors know about iron & RLS, I would be very surprised if detailed instructions are given.I did tell them I had arranged an iron infusion myself and that serum ferritin went to 785, but it made zero difference to my RLS.
that’s really good to hear.
Royal College of GPs and RLS
RLS Unbearable 
