Where to go from here

Please share your experiences, successes, and failures in using non-drug therapies for RLS/WED (methods of relief that don't involve swallowing or injecting anything), including compression, heat, light, stretches, acupuncture, etc. Also under this heading, medical interventions that don't involve the administration of a medicine to the body (eg. varicose-vein operations, deep-brain stimulation). [This forum contains Topics started prior to 2009 that deal with Non-prescription Medicines, Supplements, & Diet.]
sleepnot
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Joined: Sun Oct 05, 2014 4:01 am

Where to go from here

Postby sleepnot » Wed Dec 16, 2015 6:06 pm

My Neurologist (the one in the city who specializes in RLS) says she has tried everything she knows and says I am one of the worst cases she has ever treated.I have to know there is another option or why go on so my question is, where do I go from here? Mayo Clinic or Johns Hopkins? I know it will take months to get into either and I need to start now. Help!!

Rustsmith
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Re: Where to go from here

Postby Rustsmith » Wed Dec 16, 2015 6:38 pm

Here's a couple of suggestions:

1. If you current neurologist is willing to continue working with you, buy a copy of "Clinical Management of Restless Legs Syndrome" by Lee, Buchfuhrer, Allen and Hening. You can get it from Amazon. Read through it yourself and then give it to you doctor and ask her to read it as well. That should give her an idea of the next steps for our treatment.

2. Look at the Foundation's website and get the list of Quality Care Centers. This give you some options beyond Mayo and Hopkins that may be closer to you. All of the Quality clinics are checked out before hand for expertise in treating difficult RLS patients and many also are associated with RLS research groups.
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.

sleepnot
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Joined: Sun Oct 05, 2014 4:01 am

Re: Where to go from here

Postby sleepnot » Wed Dec 16, 2015 7:08 pm

Thank you so much for the information.

Jen
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Joined: Fri Nov 27, 2015 4:53 am

Re: Where to go from here

Postby Jen » Wed Dec 16, 2015 9:32 pm

I am so sorry for your suffering! Best wishes for a fast road in to somewhere with more options to try.

sleepnot
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Joined: Sun Oct 05, 2014 4:01 am

Re: Where to go from here

Postby sleepnot » Wed Dec 16, 2015 10:52 pm

Thanks. That is what we all need.

ViewsAskew
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Re: Where to go from here

Postby ViewsAskew » Thu Dec 17, 2015 10:08 am

The Quality Care Centers are all excellent.

I fly to California to see Dr. Buchfurher - totally worth it to me. Before I did that, I used the book mentioned and worked with my GP. It worked well enough, but seeing Dr. B. is better :-).
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.

sleepnot
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Joined: Sun Oct 05, 2014 4:01 am

Re: Where to go from here

Postby sleepnot » Thu Dec 17, 2015 2:38 pm

Thank you for the feedback. I think the Mayo Clinic is the closest location to me so that is most likely where I will try to get scheduled. So good to know there are so many kindred souls out there, also sad that there are so many of us. Thanks again!

Polar Bear
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Location: N. Ireland

Re: Where to go from here

Postby Polar Bear » Thu Dec 17, 2015 7:35 pm

I do hope that you get an appointment sooner that you expect.

There is no RLS expert of any description in my area and I use the book referred to by Rustsmith. Fortunately my GP is willing to cooperate but I would love an expert to take the lead.
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

badnights
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Re: Where to go from here

Postby badnights » Mon Dec 21, 2015 8:32 am

There are always more options. You'll find many more. And something will work, will improve the quality of your life so much that you'll laugh again. There are lots of medications, both within and outside the three main classes of meds used to treat WED/RLS, there might be vitamins or minerals that you're low in, some people have been helped by varicose vein surgery, others by diet changes. There are lots of strange-seeming things that have eliminated WED or made it bearable for various people. There are always options. Finding a doctor to guide you through them is tricky but persevere, it;s worth it.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

sleepnot
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Joined: Sun Oct 05, 2014 4:01 am

Re: Where to go from here

Postby sleepnot » Mon Dec 21, 2015 12:20 pm

Thank you Beth. Your reply does give me hope. When you hear from a so called expert in the field and they have given up on you, things can look pretty hopeless. I will stick with this and not give up on myself. You don't know how timely your response was. Again, thank you for that little light at the end of a dark tunnel.
Jayne

Polar Bear
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Re: Where to go from here

Postby Polar Bear » Mon Dec 21, 2015 12:26 pm

sleepnot - I'm sending positive hopes that your little light will continue to grow.
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

sleepnot
Posts: 11
Joined: Sun Oct 05, 2014 4:01 am

Re: Where to go from here

Postby sleepnot » Mon Dec 21, 2015 2:11 pm

You guys are so good and you all do give me hope. Thank you!

sleepdancer2
Posts: 155
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Re: Where to go from here

Postby sleepdancer2 » Thu Dec 24, 2015 10:57 am

Sleepnot, i don't know what all your doctor has tried before giving up, but I'm guessing there's things left to try. I do hope you can see someone who can bring ideas to you, or at least if that doesn't happen, is open to you bringing ideas to them. I spent many years suffering and going through augmentation then getting off a med just to start all over again. It was a very disheartening time. I've been one of the lucky ones whose RLS was tolerable once the augmentation went away, and my nighttime limb movements are well controlled by a TENS Unit. Keep searching for YOUR solution.
My Augmentation Sleep Video: https://www.youtube.com/watch?v=jE7WA_5c73c

Myproblem
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Joined: Sun Nov 15, 2015 4:20 pm

Re: Where to go from here

Postby Myproblem » Thu Dec 24, 2015 11:30 am

Dear Sleepnot
Pls dont despire. Believe me RLS/WED is not the end of the road.You are going to overcome it.
I donot know for how long I have been suffering WED.From 2005 only I was advised symptomatic medicines. I also do have the side effects/ augmentation pblms/etc and,yes, I too got frustrated.That is when I thought of my Mom.She was suffering with RLS from typical symptoms I can recall.When I was a boy,I remember,She used to ask me to stand on her calves or massage with all my strength.But she lived with it till death bcz she had to,55/60 yrs back nothing much was known abt rls.Except ayurvedic oils for massage nothing was available But She just refused to succumb emotionally.
Ofcourse few WED patients are in touch Neorologists as well as Ayurveda physicians in our place.We learn serious research/experiments are going on in that branch also with mutual discussions.3rd week of Jan "16 I have agreed to undergo a 14 day hospitalised treatment in ayurveda. In case I feel better and if the medicines are free of side effects I shall certainly share my experiences with you all. Let us hope for good.Wish you all a Very happy Xmas and a wonderful 2016
Regards

sleepnot
Posts: 11
Joined: Sun Oct 05, 2014 4:01 am

Re: Where to go from here

Postby sleepnot » Sat Dec 26, 2015 10:01 pm

Again, thanks to all of you that responded to my plea. I will keep searching and it is wonderful to know that there is a forum out there for our questions. Here is to a better year ahead. I will be glad 2015 will be behind me.


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