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Seeking RLS doc in Portland

Posted: Thu Jul 13, 2017 3:53 pm
by dziner05
So, I had finally found a doctor in Chicago to treat my RLS. She is amazing! I have it 24/7, and the only med that works is Norco. I've tried all the other usual meds to no avail. The problem is I've moved to Portland OR, and I have to start from scratch. Ugh!! I need to find a doctor that isn't afraid of prescribing opioids, and I don't even know where to start. I was hoping someone here might be able to help me. Without the Norco to control my legs, I don't even know what I am going to do. The thought of it scares the crap out of me, and I'm just terrified. Any advice or recommendations would so appreciated!

Re: Seeking RLS doc in Portland

Posted: Thu Jul 13, 2017 4:31 pm
by Rustsmith
Christy, I made a similar move last year from Texas to Colorado so I completely understand.

First, try calling the offices of your local neurologists and ask three questions. 1) Does the doctor have experience treating patients with severe RLS and 2) is the doctor willing to prescribe opioids for chronic conditions like RLS. If not, 3) do they know of a different neurologist in town who would be willing to accept you as a patient since an opioid is the only thing left to treat your RLS.

Next, check the list of doctors on the RLS Foundation's list. These doctors ask to be put onto the list and do not have to meet the same criteria as the Quality Care Clinics. So you might not be successful with one of them.

If that does not work, look into what would be necessary to travel to the nearest medical school. The doctors at theses schools seem to be less afraid of writing opioid prescriptions than doctors in small practices or who work under the umbrella of a local hospital.

Finally, that would leave travel to one of the Foundation's Quality Care Clinics. The closest one to you would probably be at Stanford.

Re: Seeking RLS doc in Portland

Posted: Thu Jul 13, 2017 8:35 pm
by dziner05
Steve, thank you so much! I thought of calling and asking regarding opioid prescriptions, but there is always the fear of appearing to be a drug seeker. I guess there really isn't a way around it though. Again, thank you for responding! :)

Re: Seeking RLS doc in Portland

Posted: Thu Jul 13, 2017 9:16 pm
by ViewsAskew
It is SO hard, Christy.

Just out of curiosity, who did you use in the Chicago area? I have yet to find anyone here. Am moving to CA shortly, but am curious who you found here.

Re: Seeking RLS doc in Portland

Posted: Thu Jul 13, 2017 9:52 pm
by Rustsmith
Christy, when I called I explained to the receptionist that I wanted to find out about whether the doctor had other severe RLS patients and then asked to speak with his nurse. When the nurse came on, I explained that I had severe RLS, had augmented on two different dopamine agonists and that gabapentin/Horizant were not effective. So, under those circumstances would the doctor be willing to prescribe an opioid. Every nurse that I asked responded with "No". However, my new home town had a previous history of a doctor who ran a pill mill, so all of the doctors now are under close DEA scrutiny. I don't blame them for not wanting me, but the resulting 100 mile drive each way to my new doctor is a burden. Fortunately, my new doctor is great, so it has been a mixed blessing.

Re: Seeking RLS doc in Portland

Posted: Thu Jul 13, 2017 10:56 pm
by yawny
Rustsmith wrote:...If that does not work, look into what would be necessary to travel to the nearest medical school. The doctors at theses schools seem to be less afraid of writing opioid prescriptions than doctors in small practices or who work under the umbrella of a local hospital.


Steve, could you explain the difference between the hospitals...is a medical school a teaching hospital?

I found everything you wrote pretty fascinating and educational. I don't use opioids but am still beyond frustrated at the lack of logic, rationality, and also over-reaction in this current opioid climate. I know so many of my RLS peeps suffer, so that's definitely fuel for my fire. I'm just going to say it...it's soooooooooo stupid!

Christy, I hope you find a great doctor soon.

Re: Seeking RLS doc in Portland

Posted: Thu Jul 13, 2017 11:07 pm
by Rustsmith
yawny, I am definitely not an expert on this (perhaps Holland can clarify). It is my understanding that medical schools are just that, schools that teach medicine. Teaching hospitals are hospitals that are usually associated with medical schools where the students can get clinical experience.

So, as a patient who is in need of hospitalization, you would go to the teaching hospital. If you just need the expertise of highly qualified doctor, then you might become the patient of a professor at the medical school without actually becoming involved with the hospital. Granted, the distinction between the two is very fine as that patient of a professor at the medical school might ultimately become a patient at the teaching hospital if hospitalization ever became necessary.