Hi, new here

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.
jul2873
Posts: 347
Joined: Thu Nov 15, 2012 7:32 pm

Re: Hi, new here

Postby jul2873 » Thu Sep 15, 2016 6:03 am

I just don't understand how a "Quality Center" can have a prohibition from prescribing a medication that may be the only kind that can help a patient. That's just wong.

ViewsAskew
Moderator
Posts: 14894
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: Hi, new here

Postby ViewsAskew » Fri Sep 16, 2016 7:09 am

jul2873 wrote:I just don't understand how a "Quality Center" can have a prohibition from prescribing a medication that may be the only kind that can help a patient. That's just wong.


I think it was a "from the top" kind of edict and it happened long after certification. Imagine that you are some adminstrator in a hospital and you see that something like 75% (or a similar large percentage) of new patients come and get opioids at their first visit. Given the climate against them, you'd likely freak out! Well, OK, you wouldn't and I wouldn't because we'd research it and find out and know it was for a good reason. But, my guess is that many administrative people would not, sadly. Soon there would be a new policy and the doctors there would be struck trying to explain, get around it, etc.

But, it definitely seems just plain wrong!
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.

Midnightmarathon
Posts: 9
Joined: Sat Sep 03, 2016 7:54 pm

Re: Hi, new here

Postby Midnightmarathon » Mon Sep 19, 2016 10:09 pm

To Steve and anyone else who has managed to get treated with opiods, It seems to be the opinion of many if not all of you that I am at the point where I need opiates to control the monster? NOW the question, how the heck to you find a doctor to prescrible them? I went to for a 3rd opinion today and THEY said I most problably need opiates, but I would first have to have another sleep study though THEM (not sure my insurance will cover since I just had one 6 weeks ago) and THEN I would have to be seen by a behavioral pycholologist at one of 2 center (each well over an hour from my house without traffic). Anyway, any suggestions? Desparate in Northern NJ

Polar Bear
Moderator
Posts: 6888
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Hi, new here

Postby Polar Bear » Mon Sep 19, 2016 10:53 pm

My medication regime for symptoms is a cocktail of ropinerole/cocodamol/tramadol slow release. It took a long time of trial and error and the cooperation of my GP to reach this stage and I am fortunate that my GP is understanding and was willing to take note of the Foundation information and also emails to me from Dr Buchfuhrer.
I have never had a sleep study, it has never even been discussed. And certainly a behavioural psychologist wouldn't be considered.
However, I am not in the US. Also, although my GP prescribes the cocodamol with caution even though it is on the low end of opioids, we do not appear to have the same fears regarding the prescribing. Regarding stronger opioids I think he'd take some persuasion.

Your appointment in January can't come soon enough.
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

Rustsmith
Moderator
Posts: 2660
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: Hi, new here

Postby Rustsmith » Mon Sep 19, 2016 11:29 pm

Last winter I relocated 1000 miles partially to get access to medical marijuana. When we arrived, I found out that there is a major local problem with prescription drug abuse and that NO neurologist or GP anywhere in town is willing to write prescriptions for any kind of opiate. I checked with the staff at the RLS Foundation and found out that the neurology department at the medical school for the state university was willing to do so. It is 100 miles away and I had to wait for 4 months for my first appointment, but it went very smoothly and I get along very will with my doctor.

My suggestion for you is to see if you can get into one of the RLS Foundation Quality Care Centers. There is one at Yale, granted it isn't close (by NE standards), but you could take the train there and back in a day. Getting into one of the centers almost guarantees the best care and should sidestep the problems with finding someone willing to write an opiate prescription (at least until the political climate makes things even worse).
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.

ViewsAskew
Moderator
Posts: 14894
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: Hi, new here

Postby ViewsAskew » Tue Sep 20, 2016 4:03 am

As already noted - and seems you are experiencing - it's getting very hard. I honestly don't know what I'd do if I didn't have Dr. B as my doctor. For years, I've flown to CA from Chicago to see him. As Steve recently did, I am also moving to be close - I've had it with trying to make it work with doctors who don't get it and of trying to manage it from a few thousand miles away.

Other than a RLS Quality Care Center, not sure how you could do it. Maybe a Pain Clinic? One of our members did that years ago. Might still work.
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.

badnights
Moderator
Posts: 4569
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Hi, new here

Postby badnights » Tue Sep 20, 2016 5:50 am

Instead of forcing you to have another sleep study will they accept your records from the study 6 weeks ago? I imagine you asked them that...
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


Return to “Just Joined?”

Who is online

Users browsing this forum: No registered users and 2 guests