World RLS Day: Hello everyone. As you... - Restless Legs Syn...

Restless Legs Syndrome

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World RLS Day

Anuska-aespi profile image
7 Replies

Hello everyone. As you know, September 23 is World RLS Day. In addition, this year is the tenth anniversary of the commemoration of this day. In Spain (I am the president) we are going to have a very special event in Alicante, at the Hotel Gran Sol. With doctors who are experts in Restless Legs Syndrome. You are all invited. It is at 3:30 p.m. with coffee, tea, juices and pastries. If anyone wants more information, please send me an email to ana@aespi.net. A hug to all

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Anuska-aespi profile image
Anuska-aespi
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7 Replies

Thanks for letting us know Anuska 😊

Kaarina profile image
KaarinaAdministrator

A lovely, warm message, Anuska-aespi. Thank you. Big congratulations on what will be the 10th anniversary of the commemoration of this day for you. Sounds like a lot has been planned for this special, big day. . Gentle hugs back to you.

Madlegs1 profile image
Madlegs1

Great idea!💚

soundofmetal profile image
soundofmetal

How great is that! Well done for inviting everyone along, I’m in England so sadly won’t be there but I wish you all the very best for a great day ❤️

Jukebox55 profile image
Jukebox55

What a great idea!!! We need this is the uk so we can invite those doctors who have hard ears!! Lets do something on this day to raise awareness of this most common neurological disorder.

Merny5 profile image
Merny5

Aniska-aespi, thank you for your dedication and invitation. I wish I could attend but Spain is a long way to go from the US😊 I hope the event is a success!

Sid_Arthur profile image
Sid_Arthur

Well, I've learnt there's a World RLS Day from this post - gracias ! 🙏 🙂

And, from the Pernicious Anaemia (PA) forum, that there's also a B12 Awareness Week,18-24 Sept (2023): b12awareness.org/mission-st... . . . & b12awareness.org/2023/09/01...

NOTE: RLS could well be a symptom of functional B12 ( or, cobalamin) deficiency which cannot be ACCURATELY assessed by blood test(s) alone. The B12 serum test on its own is said to be particularly unreliable & insensitive ( - including by UK's NICE, - National Institute for Clinical Excellence, from as long ago as 2015).

Members of this RLS forum may well benefit from exploring 'B12d' ( = cobalamin deficiency) via the above starting points, and:

a) HU's PA forum,

b) the site b12d.org ... &

c) B12deficiency.info

- each of which is HIGHLY recommended & very knowledgeable areas of information & clinical practice ! 😀

For some/many with RSL, a thorough (self-) assessment of B12d ( - now possible, via the above sites!) is likely to confirm a previously missed/not considered diagnosis. Worth doing, . . . REALLY, . . . & recommended !

B12 injections 💉💉💉s may well needed by some with confirmed B12d . . . as it is known that oral tablets, sprays etc don't work in a sub-group of those with it.

Many have learnt how to self-inject, after first being given injections ( - like those with insulin dependent diabetes, learn to inject insulin ! Fortunately B12 injections aren't required before each meal, but the frequency can vary markedly, from one case to another; daily, weekly, monthly, & seasonally).

In a portion of RLS, the underlying CAUSE may well be 'B12d' - worth exploring, reasonably for oneself, surely ??! One can start by assessing the signs & symptoms, using the checkers at the above sites.

You've done a GREAT job with your site: ana@aespi.net Anuska - well done! Time to add some links to the B12d sites mentioned above ?

Please feel free to ask your RLS-specialist Drs if they now thoroughly assess 'B12d'. In the UK, . . . it's STILL not as common as it COULD be, . . . sadly ! 😭❓

AtB,

Sid 😐

Sat 9 September 2023, . . . on a peaceful UK morning.

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