Welcome New Members - July 2013

[ViewsAskew]

It's a new month, and new members are here to join us.

Some general ideas:
1. Read the sticky posts in each section of the board.
2. Consider starting a new topic/thread. Tell us about what's going on with you, introduce yourself.
3. Consider reading old threads - there is a LOT of good info in them.

We welcome each of you and hope you find a home here, as many of us have done.

[ViewsAskew]

Monday - welcome to

acorneliusj - who has had WED for awhile, but it's gotten worse and acornedliusj is frustrated with the care received from doctors and is looking for some suggestions on how to work with physicians.

desertphile - has been through 45 years of WED and suffering.

JuJuLegs - looking for the latest treatments.

[Polar Bear]

Tuesday 2 July

Welcome today to-
Steve Leibrecht - who is seeking help. That's exactly how all of us started here, If you already have questions then go ahead and ask, start a thread.
There is a lot of information available and as you read your way through the threads you may find all sorts of questions forming. We want to help.

welcome also to steffielea, who wants to get off her current medication.

and to Suzannemaria. What medication were you on and which one are you switching to? What caused you to make the switch? Have you heard of augmentation (see my first signature link) - could that be what happened to you? It is so sad that people don't realize what a vile disease this is and how terrible it is to try to cope. There are people here who will share the experiences they have had, convincing loved ones that the disease is real and has a devastating impact on our lives.

[badnights]

Welcome to panicky. Start a topic in the General or Just Joined forum, describing your symptoms. Lots of people will get back to you and you can compare your symptoms with ours. If you need help starting a topic, see the tiny FAQ link at top right.

Welcome also sepiareverb - who has been recently diagnosed and is unhappy with the treatment options. Tell us a little about yourself, how you have coped before being diagnosed and what options you think that there are for treatment. We want to help.

[ViewsAskew]

Friday, welcome:
SunnySky - not diagnosed yet, but strongly suspects it. SunnySky, many of us self -diagnosed - and if treatment isn't needed, no need to see the doctor yet. If it's preventing you from living your life, though, it might be time to find out for sure.

crl363 - whose had WED/RLS for 10 years and is looking to help others.

Nightwalker53 - who has WED severely and spends hours every night walking the floors and taking baths and only getting a few hours sleep.

baby04 - who has just been diagnosed.

Please, go to the Just Joined section and tell us about yourselves. Or go to another appropriate section and ask questions. Or just jump in existing conversations. We are best - as a board - when we all help each other, communicate and share our frustrations and our successes.

[badnights]

A Sunday July 7 welcome to shirjeel, fellow sufferer. So sorry you have to be here. Please post and tell us about yourself.

[Polar Bear]

Tuesday 8 July
Welcome to sleeplessinMA - wh has had symptoms for as long as can be remembered and now is looking to get a good night's sleep. Dr has prescribed Requip.
Let us know a bit about yourself and your history with RLS/WED and we will try to help. A good night's sleep is the Holy Grail to most of us. Once you feel ready, start a thread and we will be there to support you.

Welcome also to swede71535 - who want to keep abreast with anything new in regard to WED. Read through the stickies and feel free to ask questions.

[ViewsAskew]

July 9 - Welcome to backrowbarb - who is lookin for any tips others may have for dealing with WED and who wants to talk with others who understand how stressful and depressing it can be.

We hear you on that! Please, read posts, reply to them, start a new topic/thread. We're here to help.

[Polar Bear]

Thursday 11 July

Welcome to:
billyinslo - who has had WED/RLS for 40 years and whose Neuro says will have Parkinsons Disease in the next 10 years. Please Please start a thread and tell us a little about yourself, in particular what is behind your neuro saying this. My understanding is that people with RLS/WED are no more likely to suffer from Parkinsons that any other person. This needs to be clarified.

eskimo - who was diagnosed 5 years ago whilst pregnant. She has tried requip, mirapex and neupro all with major side effects and doesn't know what to do mext.
Charlee - who wants to learn more about issues facing the parents of children diagnosed with RLS/WED. Please look in the Special Populations section. Post and ask questions.
runnerchick82 - is a keen runner and recently started requip, There are difficulties with the condition and side effects. Wants to chat with others who are active and face the same issues.

Please read through the threads, make a post and ask questions when you are ready. We are keen to help and answer questions if we can.

[badnights]

welcome on Friday July 12 to
Panicky
Iceager7 and
wendywoo

It will definitely help to discuss things with other people, whether it's your symptoms, your medication, your despair, your ideas. So many newcomers join us because of medication that seems to have lost its effectiveness over time. That does not necessarily mean your disease is getting worse; it may be a sign of augmentation, which is a paradoxical thing where the medication starts to make your symptoms start sooner, get stronger, spread to arms, etc.

This might be happening if you take pramipexole/Mirapex, ropinirole/Requip, or levo-carbidopa/Sinemet; and the saddest part of it is that so many doctors don't know anything about it. Many doctors are learning, but so many patients are still suffering needlessly. There is information on this horrendous medication effect in the links below my name, at the bottom of this post.

[ViewsAskew]

Saturday - welcome to Beedldy, who's looking for information, help and ideas.

Welcome, Beedldy. Hope you find what you're looking for.

[ViewsAskew]

Sunday, welcome to Vonbrendal, who wants to know more about WED/RLS.

Look around, ask questions, start a new topic post and introduce yourself. We're all here to learn and help.

[badnights]

Sunday, welcome to greyskies.
The archived webinars are hard to find, we just have a discussion about that. They are at http://wedinfo.blogspot.com, search for "webinar" in the "search this site" link at the right

They are recordings, I don't know if any of them include the slides too.

It makes life very difficult if our partners don't "get" WED/RLS. Start a thread and tell us about yourself.

[ViewsAskew]

Monday - Welcome to irenelou, who is suffering with WED/RLS and is looking for ways to find relief.

And to donkeytwitches, who hasn't had luck connecting with a local support group and is hoping this will work out instead.

Please look around, read posts, ask questions. A great way to get started is to introduce yourself in by starting a new topic in the Just Joined section. We are here to help, listen, and provide the understanding that few others can if they don't have this delightful condition (said tongue firmly in cheek!).

[badnights]

Tuesday Jul 16
welcome to maryl

There's not a cure, but there is medication - please learn about it before you ask your doctor for it! Get your ferritin level tested -ferritin is a protein in the blood that transports iron, and raising levels above 100 ng/ml can reduce symptoms for some of us. Much more information here! I recommend you start with the WED Foundation's brochures at http://www.willis-ekbom.org/about-rls-wed/publications