Looking for a Dr in the Mid-Ohio Valley that knows something about RLS. The neurologist I go to doesn’t listen to what I have to say.

[Woody4]

I’m tired of just having pills tossed at me with me not having a say. I think from reading blogs, like this one, plus having it, that I do know a little about RLS and it’s treatment

[DicCarlson]

I just replied above recommending Johns Hopkins Neurology. They're a 6 1/2 hour card drive from Columbus OH. Johns Hopkins is a world famous research and treatment center for RLS. hopkinsmedicine.org/neurolo...

[Seaux in reply to DicCarlson]

You could also call JHU dept of neurology and ask them if they know of a neurologist in central Ohio that treats RLS. If and when you get names of neurologists in Ohio, ask the neurologist SPECIFICALLY what he knows about RLS and augmentation, and what he recommends FIRST re treatment. I think his answer should be to check your ferritin level. This is what Dr. Early at JHU recommended I do first. My ferritin level was normal but even if your ferritin is above 75, you can still have RLS. Another option for you that is closer to home is to call one of the specialized care centers recommended by RLS.org. I think there is one in Tennessee and they certainly should be able to recommend a neurologist close to you. Hope this helps.

[Joolsg]

This is a UK wesite so you may not get the results you would get on a US site.

The USA foundation is rls.org & they have centres of excellence & a list of knowledgeable neurologists.

Tell me which cities you live near & I will have a look for you( I have membership access).

[Woody4 in reply to Joolsg]

Yeah I know most people on here are from the U.K. Over the few years I have been monitoring and asking questions here, every now and then someone from the States does appear. It seems the U.K. takes RLS more seriously than here. The nearest cities to me are Parkersburg, WV and Marietta, Ohio. Any info would be very much appreciated.

[Joolsg in reply to Woody4]

I’ve searched both areas & also Pittsburgh ( as it’s large) & NO healthcare providers came up.

You may have to travel to one of the Centres of Excellence- one in Redwood, California, one in Texas, one in Baltimore & one in Massachusetts.

There’s also Dr Glen Brookes in NY.

Maybe one of our American visitors will have a recommendation for someone nearer to you.

[Joolsg in reply to Woody4]

Believe me, the UK doesn’t take RLS seriously at all! There are only a handful of neurologists who have some knowledge of the disease & they’re at least a decade behind the top experts in the USA. You have Drs Buchfuhrer , Early, Winkleman, Allen,Ondo to name a few.

However, like here, the majority of doctors & neurologists know nothing & many prescribe the wrong meds & over prescribe Dopamine Agonists.

It’s terrifying really.

[Woody4 in reply to Joolsg]

What I have been running into is that I’m a Vet and the nonVA neurologist I go to only sees the government paying the bill. Last visit, he came into the examination room I was in for at the most 5 minutes. He billed the government $295. He is an older gentleman who knows the old meds that are traditionally given for RLS and he doesn’t want to hear anything from me about anything I’ve read that contradicts him.

[Joolsg in reply to Woody4]

I hear you. The old dinosaurs can be the worst. So many of us have sat sobbing in a doctor’s surgery with this disease.

I am so thankful for this website & the advice of the knowledgeable people who helped me get off Ropinirole 4 years ago.

If you can find a doctor who will prescribe an opioid like tramadol/OxyContin/Methadone or Buprenorphine to help you through withdrawal that would be a result.

My doctor refused to give me tramadol but luckily my MS neurologist realised how badly was suffering during withdrawal & told her to give me oxycontin.

I’m still on it now but hoping to switch to Buprenorphine or Temgesic soon.

I really think you should start slowly reducing now & use cannabis ( or opioids if you can get them) & then the Horizant should kick in.

Many people find the alpha2delta ligands like Gabapentin, pregabalin & Horizant work brilliantly for them.

Fingers crossed you can find someone who will prescribe opioids for the short term.

[Joolsg]

My magazine just arrived from the USA foundation for RLS & it contains support group help numbers. Try contacting the group leader for Ohio & she may have a list of knowledgeable neurologists .

Rosemary Stader

Columbus, OH

614-940-7142

Good luck.

[Woody4 in reply to Joolsg]

Thanks Joolsg!! I really appreciate your help.

[Joolsg in reply to Woody4]

No problem- we all have to help each other as no one else will.

Good luck.

[Seaux]

Joolsg answer the best! Contact her ASAP!!