Face To Face Meet Up Dream...

I really do wish that there was someplace that we could all meet up

and be in the presence of a person who really studied this disease

and is up to date on the most current findings. It would be so

great to look at everyone that we are talking to on this...

and to have a specialist *is there really a RLS doctor* to

lead discussion, answer questions and fill us in on what's been

tried, what drug companies are doing to help this cause and

help us find the right medicines. I really do wish that we were

all on the same page with the same doctor...and that this doctor

would take everything that we tell them seriously. .

[Stephenr]

rlshelp.org

American foundation dedicated to RLS

The medical advisor, Dr Buchfuhrer, is considered a specialist on RLS and has authored some books on RLS. Google him if u wish.

On this website you will find 104 pages of questions to Dr B and his answers., all for free. He is very quick to reply as well

[Hidden in reply to Stephenr]

I think the site is rather long, bit hard to find what you need sometimes, i would be a good idea to get rid of a bit of the older stuff, and update a little, when your looking for answers and desperate, it can get a little frustrating with so many pages, but some good info all the same

[Stephenr in reply to Hidden]

Yes u are right..the website looks a little old..i like to read the patient letters though to see what is working for people and it is great to be able to get a doctor to reply to your questions for free

[Hidden in reply to Stephenr]

I am the same , i like looking at the latest posts from people to see what they are saying about their RLS and reading Dr.B reply to them. You can get good insight and info from what the doctor says. The old letters can be a bit distracting as things have moved on regarding treatment since the website first started. The treatment page i used to look at all the time, as i was able to ask my doctor for RLS meds to try by telling him of some of the RLS meds he may not have been familiar with. I have also emailed him for advise in the past.

For those newbies to RLS and needing more info, this is a site i tell them to look at. i guess because it has been useful for me.

[Daragh]

Hi Yikes,

The 2013 RLS-UK AGM will have Professor K Ray Chaudhuri as one of our guest speakers. Prof. Chaudhuri is a consultant neurologist and head of the national RLS clinic at King's College London, the only specialist clinic of its type in the UK. The AGM will include a Q&A discussion, which always is popular with those attending.

Invitations to attend our AGM, which will be held in September in London, will be sent later this year. The AGM is only open to RLS-UK charity members. Application forms to join can be found on the rls-uk.org website.

While this doesn't answer your 'all on the same page with the same doctor' wish, hopefully it starts us all moving in that direction.

Daragh, Chair RLS-UK

[Hidden in reply to Daragh]

I think this one will be a must for me this year, and ive heard good things about Professor Chaudhuri, also dr Julian Spinks, so we do have some great help here, and im thankfull for it

[Hidden]

Hi Yikes and all. if only we could do all that is on Yikes wish list. Those RLS doctors who know and specialise in RLS are far and few. One i know who does it well is Dr. Buchfuhrer as stated on here many times who is in the USA, and the one that Daragh has mentioned in the UK. If only we here in the UK, had a specialised RLS doctor who had a website for questions and answers on RLS as the States have.

[thedragon]

I would love to meet you yikes and talk and talk and cry and moan and laugh......maybe one day!

[Hidden in reply to thedragon]

I'll be there too

[Hidden]

moo.... I was up all this night and I have to go to work now.

I feel like a big lazy cow today.

I'm on a panel for RA, I talk directly to one of the drug companies.

They have not once given me an idea of what's down the pipeline.

I feel like I've gotta know already.

Just in the last 20 mins or so my legs are going at it..

It's going to be pitiful to have to sit and do paperwork,

insurance work and make calls. I will be up while

everyone sits several times. People at work joke

and say that I should do my work on a treadmill and

just use my dragon voice recognition software to

do what I've gotta do.

My legs, my legs... they are already running for the door...

Hope everyone sleeps well tonight. <3

[Hidden]

To tell the truth Yikes, i dont think any thing new as regarding meds for RLS is in the pipeline. I think they have run out of ideas right now.

[nightdancer]

There are no new meds in the pipeline, only new formulations of old drugs. These days "new" does not really mean "new" sometimes. For example the drug Horizant, available in the US is being reformulated to half the original dose, and it will be touted as a "new" RLS drug, when it is only a different dose.

[Hidden]

Drug dealers just plan for our pocket and wallets

[CathyS]

My neurologist (US) told me that nobody's doing any big research on RLS because nobody (i.e.no 'celebrity') DIES from RLS. He just doesn't understand that sometimes we think that would be easier! But we hang in there and keep hoping....

[Hidden]

yes YIKES i agree with you , getting everyone together would really benifit us all , anything that keeps u awake for hours on end is bad for your health , perhaps we should all have a chat in the middle of the night ...........its about time someone helped us .

[bvlgari]

Reading all your comments keep me sane knowing I am not alone suffering . Already been to bed and now up again as I was keeping hubby awake,got a feeling it's going to be a long night.!