Need RLS physician in Wisconsin, US

[Skifam]

Does anyone have a recommendation for an understanding and knowledgeable neurologist or family physician in Wisconsin? My daughter’s current physician is retiring and she is in desperate need of a physician that understands and treats RLS. Any recommendations will be greatly appreciated.

[Joolsg]

This is a UK help site so you may not get many responses. However, many of us are also members of the US foundation and their magazine, NightWalkers has help details.These are contacts for local support networks and they might know of knowledgeable doctors in WI.

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[Skifam in reply to Joolsg]

Thank you so much for your reply. I know this is a UK site, but found the UK so much more advanced in the treatment and understanding of RLS. The public in general and even many physicians in the US still consider it a joke and do not acknowledge its seriousness. Thus, my reason for asking on the UK site. I will follow up on your excellent suggestions. Again, thank you.

[Joolsg in reply to Skifam]

That's interesting because we regard the USA as being far ahead of the UK. All the top experts are in the USA but I expect knowledge is limited to those few doctors.Like the US, we're trying to raise awareness and get RLS taught at medical schools and during GP training.

I hope you manage to find a knowledgeable doctor.

Good luck.

[Skifam in reply to Joolsg]

I know there are excellent RLS doctors in the US, but they are few compared to other specialties. Unfortunately in the US, the media has done a hatchet job on this disease, skewing the perception of many. However, I’ve just started looking as our previous physician was very good. I’m hoping there is someone perhaps just around the corner. Regardless, an empathetic and knowledgeable physician is worth traveling any distance, so will continue to search.

[Joolsg]

There's also the Mayo Clinic in Rochester, Minnesota which is a Centre of Excellence for RLS. I know it may betoo far but you'd get expert care.

[Skifam in reply to Joolsg]

Mayo is a distance away, but still a consideration because of its excellent reputation. Just trying to find someone more local in Wisconsin, but with telehealth becoming more doable, it may not be so out of reach.

[Kayakcarole in reply to Skifam]

I live in south central Wisconsin. I’ve had a telemedicine appointment with Dr. Buchfuhrer. The problem with having an out of state physician is that you still need someone local in Wisconsin to write the Rx for any recommended drugs. His first recommendation was for Gabapentin which didn’t work for me. He also suggested low dose opioids but no physician I know will touch that one.

I suggest you have her also become a member of the Restless Legs Syndrome Foundation and get their magazine “Nightwalkers”. It is also a wealth of information including doctor recommendations.

rls.org

[Skifam in reply to Kayakcarole]

Did not know you still need a local physician to write scripts. Puts a real dent in the process. It’s just so frustrating that there are so many barriers to good treatment in a country that’s supposed to be so medically advanced. Thank you for the suggestion of the organization and magazine, will follow-up.

[Todge in reply to Skifam]

What if you went to Eau Claire or La Crosse? They are both Mayo sites. I live in Rochester, MN so luckily I just go to the Mother Mayo. BUT it was the neurologist there who for years just kept upping my Ropinirole. I am in the misery stage of weaning off of it as we speak. But it was the second neurologist there who took one look at my chart and told me that I had to get off that DA crap.

[Skifam in reply to Todge]

Never thought of additional Mayo sites. Good to know and try. Will keep digging until I find a physician who is both knowledgeable and caring, one must exist somewhere in this state.

[cnote1213]

The two best in the US are Dr Christopher Early at John Hopkins and Dr Mark Buchfuhrer in Los Angeles. Not close to you but I would highly recommend you get a tele health appointment with one of them. I live in Utah and did so with Dr B. It has changed my life. They are both so far ahead of almost all other docs in the US regarding treatment. Best of luck!

[Skifam in reply to cnote1213]

Thank you so very much! My daughter will seek a telehealth appointment with whomever has an opening. The only good thing to come out of COVID is the technology advancement in telehealth appointments. It’s really sad that in a country as advanced as the US in medical knowledge, there are only two doctors with the necessary skills to treat RLS patients. Again, thank you for the information.

[Kayakcarole]

I agree completely.

Dr. B can only write prescriptions if he has seen the patient at least once in his office in CA.

[cnote1213 in reply to Kayakcarole]

This is true. I will tell you that it is worth every effort to fly to him for a quick visit so he can then prescribe. He does all of my prescriptions and is very available for any questions/concerns along the way. It is way easier to get an appointment with him through his LA office versus his office at Stanford University.

[Tanker1]

The restless leg foundation has a find a health care provider tool:

rls.org/treatment/find-a-he...

To better serve our members, the Foundation maintains a directory of healthcare providers who have expressed interest and knowledge in the treatment of restless legs syndrome (RLS).

You don't need to be a member to use this tool but I highly recommend joining the organization.

[Skifam in reply to Tanker1]

Thank you so much for the information. I plan on using that directory right away. I’m so amazed at the outpouring of information and knowledge in this group. I’m giving all this information to my daughter and we both plan on becoming members of the US organization, especially since her RLS has been diagnosed as familial.