Clarification requested please.

[kelirock]

I was under the impression that RLS was a neurological and sleep disorder. Latterly I have been informed that it is now classified as more of a sleep disorder than a neurological one. If this is the case, which I don't know if it is or not, a neurologist would not be an 'expert' in treating a sleep disorder. Am I correct in this assumption?

[Hidden]

Yes, no and no yes.

An official source for identifying what heading a condition comes under is the International Classification of Diseases which is reviewed and updated on a regular basis. The latest version was released in 2018 ICD-11

According to the ICD-11 "primary" RLS is coded as a "Sleep related movement disorder". (7A80)

It is also coded as a disease of the nervous system, 8A07 "Certain specified movement disorder "

However, whatever it's coded as, I wouldn't expect a neurologist to be any more or less an "expert" than a sleep specialist.

Sleep specialists tend to deal with issues that occur during sleep e.g. one of which is PLMD, whereas RLS occurs when awake.

Expertise is gained by making a particular study of something PLUS undertaking experience in dealing with it. With RLS it depends on the individual "specialst" and it could be either a neurolgist or a sleep specialst.

"Secondary" RLS is coded as a 7A87 Sleep-related movement disorder due to a medical condition. The conditions mentioned are iron deficiency, pregnancy, end-stage renal disease, and neuropathy. Which puts in under several specialities.

icd.who.int/browse11/l-m/en...

icd.who.int/browse11/l-m/en...

Any clearer?

[kelirock in reply to Hidden]

Thanks, I knew I could rely on you for a sensible explanation although this one is confusing to say the least. The more I learn about this disorder, the less I understand it...

[BAB97TIE in reply to kelirock]

I think you need to know the source of your RLS to determine the best type of doctor to treat it. In my case, my RLS is related to Anemia and for me the Anemia is caused by an intestinal condition call SIBO. I went to a Gastroenterologist who treated my SIBO with an antibiotic and that resolved my RLS.

My family doctor was the first to diagnose my RLS. He prescribed Requip which solved my symptoms. As far as he was concerned, he had successfully treated my condition.

When I learned the side effects of the medication, I went on a mission to find the source of the problem and thankfully I was fortunate to do so before I had to deal with issues like augmentation.

In the USA, most doctors match your symptoms with a medication and move on to the next patient.

You need to be your own health advocate.

[kelirock in reply to BAB97TIE]

Thank you for your response. I will keep it in mind and do some problem solving as you suggested.

[rkatt in reply to BAB97TIE]

That’s deeply fascinating. Could you tell me how SIBO was diagnosed and weather the antibiotic treatment was simple or more disruptive and radical? Thanks. And brilliantly done by the way. Five years ago I asked my doctor to consider SIBO treatment. She told me it was too huge and risky. I’m gluten allergic, which may suggest a SIBO problem, so I’ve harboured fantasies of successful treatment.

[BAB97TIE in reply to rkatt]

I suspected that I had SIBO because I had anemia and RLS. The SIBO was diagnosed with a simple breath test.

The treatment was with Rifaximin. I took 550 mg 3x a day for 14 days. No side effects at all from the antibiotic. My RLS symptoms resolved almost immediately.

Rifaximin is the generic version of Xifaxan. The generic version is not available in the USA. Xifaxan is very expensive but you can get Rifaxamin or Xifaxan from Canada at a much lower cost.

Please let me know if you have any other questions.

Good luck.

[rkatt in reply to BAB97TIE]

Thanks. That’s really good news. I’m in the UK. I have a hospital follow up appointment in January and will ask about this. Or, if my doctors practice gets going after the Covid lockdown, I’ll ask my GP. She’s much nicer and much more helpful than any neurologist I’ve seen.

[BAB97TIE in reply to rkatt]

In the USA you can take and get test results through the mail with this company:

metsol.com/contact-us/

Not sure if there is a similar company in the UK.

The USA company would do it for you but I am not sure what the shipping cost would be.

[rkatt in reply to BAB97TIE]

Thanks, that’s helpful. I’ll find out if I can get a test through the mail here. Best wishes

R

[LoisTonya]

When one has RLS during the day it can hardly be called a sleep disorder. Certainly RLS can cause sleep problems

[kelirock in reply to LoisTonya]

It is known as a sleep and neurological disorder.

[LoisTonya in reply to kelirock]

That makes sense