Looking for doctor in New Orleans area

Whether new to RLS 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.
Post Reply
mexigrl64
Posts: 2
Joined: Wed Jan 23, 2013 4:46 am

Looking for doctor in New Orleans area

Post by mexigrl64 »

Hi,

I'm new to the board, my father has had RSL/WED for over 50 years. His first symptoms were in his 20's and he just turned 80. He struggles so badly with it and it breaks my heart. For many years he would drink at night, finally getting sober just a few short years ago. The drinking helped his "jumping" (as we always called it) and so he was addicted. He has been on every different medication with some success using Mirapex and Gabapentin.

We live in Mississippi and there are no neurologists here that have been good at helping him. I've searched the internet and looked for specialists to no avail. Is there some way to find someone in the New Orleans area? It's not ideal as we live an hour away and he couldn't drive into the city but we've exhausted all the possibilities here.

This disease has been his life but at this age it is just exhausting him so badly I am desperately trying to find help for him.

Thanks,

Laurianne

ViewsAskew
Moderator
Posts: 16571
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Looking for doctor in New Orleans area

Post by ViewsAskew »

I feel for him. It's not easy. Heck, I live in Chicago and still don't have a local doc - and I've one of the best hospital systems in the country here. There just aren't that many doctors who really understand it. Many of us know more than our doctors. Not about everything doctor related, lol! But, about WED/RLS and PLMs and their treatment - indeed.

Is he taking anything now? If he is taking pramipexole (Mirapex in the US) at the moment, it is possible it could have made his symptoms worse - something called augmentation.
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: 6259
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Looking for doctor in New Orleans area

Post by badnights »

I have an idea of what you must be going through. My father doesn't have WED/RLS but he had a stroke and after I insisted he get checked for sleep disorders, he discovered he has severe obstructive sleep apnea. But he still rips the mask off at night, and my mother will leave the room to get away from the snoring without waking him up and making him put it back on. It's frustrating. The doctors he can access have no valuable information for him - they dont even insist that CPAPs save lives, so how am I to compete against that? Not exactly related to your troubles, but my Dad is of a similar age and I know that his life could be so better if only he had the right treatment; and in that, I think is the similarity.

While looking for a specialist, don;t forget that even the humble general practitioner can be a strong aly. Some of the are willing to learn about WED, to take the extra time to earn treatments for refractory WED, to go out on a limb and prescribe a med they're not familiar with, even - heavens forbid - to prescribe an opioid. The key to getting a good doctor 0- if there is a key, and really I shouldn't have said that because there isn't - is to learn as much as you can about the disease; to have what you think are your dad's issues clearly stated, and possible solutions you've come across.

Make an appt with a GP, and ask questions - have you heard of this disease, WED/RLS? CAn I show you what I;ve learned to get your opinion on it? Is it possible that opioids might help my dad? He hasn't tried an anti-convulsant, to my knowledge; do you think it would be worthwhile to try that? I heard he needs to have his serum ferritn above 100 before he starts ropinirole, but he already started it - does that mean he's going to augment? Someone told me lots of doctors don;t know what augmentation means for WED/RLS patients, so I brought you a definition........What about the rotigotine patch? That supposedly doens;t cause augmentation - should we test his ferritin adn go from there? What about Plan B? If he needs an opioid would he start out on a combination of a low-potency one like codeine and a drug that works a bit for him, like gabapentin?

I am only illustrating the way the conversation could go, since i dont have all the detailson your father. Some GPs react well to this, some are indifferent, a rare few simply dont want to hear it. That type there is no hope with, move on.

I am getting groggy so I have to finish wihtout polishing this up. Hope it's halfways sensible.


etc. etc
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

Post Reply