New to this site, July 18th 2014

Whether new to RLS/WED or new to the site, we welcome you and invite you to share your history and experiences with RLS/WED, introduce yourself, and ask questions. Successful treatment starts with a solid understanding of this disease.
Suckerbeagle
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Joined: Thu Jul 17, 2014 9:00 pm
Location: Albuquerque
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New to this site, July 18th 2014

Postby Suckerbeagle » Fri Jul 18, 2014 10:27 pm

Hoping to not feel so alone. Moved from Boston to New Mexico and had an awful time finding the right doctor. I have never lived near a support group so I hope this will be my new WED home. Cheers to all.

Polar Bear
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Location: N. Ireland

Re: New to this site, July 18th 2014

Postby Polar Bear » Fri Jul 18, 2014 10:50 pm

Welcome :)
Few of us are near to a support group. My hello is coming from the UK.
How are you managing your symptoms and have you now found a good doctor, we hope so.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

Suckerbeagle
Posts: 11
Joined: Thu Jul 17, 2014 9:00 pm
Location: Albuquerque
Contact:

Re: New to this site, July 18th 2014

Postby Suckerbeagle » Fri Jul 18, 2014 11:21 pm

Thankfully I did find an excellent neurologist in Santa Fe, an hour away but worth it. I am on gabapentin, clonazapam at night, but hydrocodone is what is saving my life. It works and it works fast. I tolerate it very well. I feel so very fortunate for myself when I read about the horrible sufferings of others. Unfortunately, very grief stricken over loss of my daughter's love because her new husband does not tolerate people who take these kinds of drugs. My father, before he died—and he knew because he had a mild case himself—made me promise that I would go on and live a good life not matter what. I will keep that promise to him.

Polar Bear
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Location: N. Ireland

Re: New to this site, July 18th 2014

Postby Polar Bear » Sat Jul 19, 2014 3:29 am

Get your chin up.. and go forward to live and enjoy that good life, which would not have been possible without your medications.
Perhaps your daughter will eventually see the situation through her own eyes.

But it goes to show that when we try to be open about this condition, be very careful who you tell about any particular medication. It is easy for someone to get swept up in a very general way on the assumptions of folks who do not understand and just see drug chasers and addicts.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

ViewsAskew
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Location: Los Angeles

Re: New to this site, July 18th 2014

Postby ViewsAskew » Sat Jul 19, 2014 7:31 am

I know that this is my support group. There isn't one around me, but even if there were, I don't think I'd leave here. Many of the people here are my friends, even though I've never met them in person. I hope one day in the future to have enough money to meet a few of them.

I hope you find it as helpful as I have.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

SunnyCat
Posts: 2
Joined: Wed Jul 23, 2014 9:17 pm

Re: New to this site, July 18th 2014

Postby SunnyCat » Fri Jul 25, 2014 6:49 pm

I have had RSL for 20 years or so and have tried all the meds and iron infusions--to no avail. I have a great neurologist and family doctor. My doctor allows me to take Vicodin and Oxicontin when needed and my neurologist started me on NeuPro patches----they work!!! However, they will cost about $230.00 for 28 patches! I just don't know if we can afford this! Has anyone tried these new patches? It's a miracle that they work---but-----
I'm glad to find this group as there is no support group where I live. :D

Rustsmith
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Location: Pueblo, Colorado

Re: New to this site, July 18th 2014

Postby Rustsmith » Fri Jul 25, 2014 8:01 pm

SunnyCat, I also started with Neupro early in June and am doing much better since the medication level doesn't peak and dip so much during the day. For the cost have you checked out the manufacturer's savings program? It does not apply to everyone and my mail order pharmacy would not accept it, but they help reduce the cost for the first year of use. To find out more and maybe get one of their savings cards, check this site:
http://www.neupro.com/parkinsons-disease/neupro-savings.aspx

The card reduced my insurance co-pay to a quarter of what I would have paid otherwise.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Polar Bear
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Posts: 7527
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: New to this site, July 18th 2014

Postby Polar Bear » Fri Jul 25, 2014 8:55 pm

Sunnycat - delighted to hear that the Neupro patches are working for you,
I hope Rustsmith's link will provide useful information regarding the cost.

It's wonderful that you have an understanding and cooperative doctor.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

ViewsAskew
Moderator
Posts: 15701
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: New to this site, July 18th 2014

Postby ViewsAskew » Fri Jul 25, 2014 11:31 pm

SunnyCat wrote:I have had RSL for 20 years or so and have tried all the meds and iron infusions--to no avail. I have a great neurologist and family doctor. My doctor allows me to take Vicodin and Oxicontin when needed and my neurologist started me on NeuPro patches----they work!!! However, they will cost about $230.00 for 28 patches! I just don't know if we can afford this! Has anyone tried these new patches? It's a miracle that they work---but-----
I'm glad to find this group as there is no support group where I live. :D


They didn't work for me, unfortunately, but that was because they caused augmentation. I hope they work out well for you for a long time.

The cost is tremendous, isn't it? I hope you can qualify for the program Rustsmith mentioned.
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

SunnyCat
Posts: 2
Joined: Wed Jul 23, 2014 9:17 pm

Re: New to this site, July 18th 2014

Postby SunnyCat » Sat Jul 26, 2014 1:00 am

Rustsmith---Thanks for the info re reduction in cost for NeuPro. They said I earned too much to qualify because I have good insurance. Oh Well----I tried :)


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