Has anyone in the US taken a long time to have their RLS diagnosed?

[SueJohnson]

Has anyone in the US taken a long time to have their RLS diagnosed and then was put on a dopamine agonist which eventually resulted in augmentation? The reason I ask is there is a feature in the weekly Health section of the Washington Post called Medical Mysteries. It would be great to have one done on RLS which would provide good publicity especially for members of Congress who could provide money for research. One does not have to live in the Washington DC area to have their story published and you don't have to write it yourself. You just provide the facts. And you don't have to have your name used. If you are interested, let me know and I will tell you how to go about it.

[Madlegs1]

Great idea, Sue!I'm in the 53rd state (Ireland) so probably don't qualify.

But I expect you will have plenty of applicants from the USA.

[Joolsg]

Pretty sure Karla at rls.org would love to hear about this and distribute it.The US foundation is the only body funding research into RLS & I know they lobby Washington every year.

Just wish we could do the same here in the UK. I'll bring it up with the Trustees.

[SueJohnson in reply to Joolsg]

I contacted Karla some months ago suggesting this but she never took up the idea which is why I thought of posting it here.

[Joolsg in reply to SueJohnson]

Hope some of our US members respond.

[DicCarlson]

I could have been that person but for the information I got on this forum! I was offered Requip more than once and refused. Iron supplementation eventually resolved the severe RLS for me.

[WideBody]

I am interested, feel free to PM me, I HATE DA drugs. It changed my behavior, ruined relationships. I was not told to stop slowly, I unknowingly went through DAWS, it was the darkest time of my life. I still have thoughts. Feel free to PM me, I live near Portland.

[SueJohnson in reply to WideBody]

Sandra Boodman is the one who writes the articles. Contact her at [e-mail].

[SueJohnson in reply to SueJohnson]

Also, refer her to the Mayo Clinic article on the updated algorithm at mayoclinicproceedings.org/a...

[WideBody in reply to SueJohnson]

Sorry, I did respond to her. I did not get a response yet. I will let you know if I do hear from Mrs. Boodman.

[TeddiJ in reply to WideBody]

WideBody-do you mind elaborating on how the DA's changed your behavior and ruined relationships? Or, was it more while you were dealing with DAWS? Thank you and so sorry you went through such hell.

[WideBody in reply to TeddiJ]

Dopamine Agonist drugs turned me into a mean paranoid narcissistic person without me knowing it. But everyone is different, some have claimed gay sex and won significant damages, online shopping, sex additions. Simply google Ropinerole Lawsuits... Mirapex lawsuits etc...

Even though I never cheated, I was very active with my poor wife. I got angry and thought everyone was accusing me, I felt justified in all my stupid petty behavior which is embarrassing to even think about.

I wasn't warned to withdraw slowly. One day I got so feed up with the Ropinerole not working, I remember the day I told my wife, I wasn't going to stop taking Ropinerole. It was a sad down hill from there. I had my own business, hard to do when I didn't answer my phone or emails.

The problem is, I had no idea what was causing until someone in a group posted this link

psychologytoday.com/us/blog...

I seriously cried when I read it, because it all made sense to me. It has taken me a long time to recover physically and emotionally from the DA drugs and I do think the DA drugs created permanent damage. (I am not a scientist).

After I ditched the DA drugs, then I found on the internet that RLS is caused by a brain iron deficiency. An alarm went off in my head... I was officially diagnosed anemic around 2010 about 5 years before the onset of RLS symptoms. With that knowledge, I asked for and got an iron infusion. Best damn thing that ever happened for my RLS, it was just 10 years to late.

I am amazed my wife and kids still speak to me. The recover has been a hard process without any real help. I really appreciate a few groups on the internet, this is probably the best one.

[TeddiJ in reply to WideBody]

Thank you so much for the information and congrats on being self-aware and getting the right help!

[Medici]

I would like to give it a go. I took53 years to be diagnosed. Do you know how long the article should be. Many thanks. Apb

[SueJohnson in reply to Medici]

Sandra Boodman is the one who writes the articles. Contact her at [e-mail]. She will write the article after getting the facts from you. It will be great to have more than one person to include in the article. Also, refer her to the Mayo Clinic article on the updated algorithm at mayoclinicproceedings.org/a...

[TeddiJ]

That is pretty much my story-although I started taking the DA's on my own when my Mom gave them to me. My/our bad! I have had a long road and am still figuring it all out....now on Methadone and also giving up artificial sweeteners while working on next steps. Best of luck to All. Shall I contact the person above or do you have enough?

[SueJohnson in reply to TeddiJ]

Definitely do reply. The more that do, the more likely she is to write an article.

[TeddiJ in reply to SueJohnson]

Will do!