RLS - Neurologist - Multiple Sclerosis

[Jessicado]

Hi everyone! A few questions.

I'm struggling to work out from all the information here whether it's considered best practice to refer RLS sufferers to a neurologist? Is anyone able to shed any light?

Related to that, does anyone know anything about RLS and multiple sclerosis (MS). IF you have RLS, is it much more common to be diagnosed with MS? There is a strong history of MS in my familyand, aside from RLS, I experience a few health problems that could be MS symptoms (all of them also can be caused by any numer of things).

Thanks in advance!

Jess

[Madlegs1]

There would seem to be divided opinion here about Neurologist or sleep clinic for rls diagnosis and help.

Seems to depend on where you are.

Some Neurologists haven't a clue. Generally , sleep clinics are at least aware of the condition.

Relationship between MS and RLS is also fraught. May have similar symptoms and origins- but I'll leave that for others to contribute.

Good luck.

[Hidden in reply to Madlegs1]

I tend to lean toward my sleepdoctor who is also a pulmonologist. The may be because he shows more interest in rls than my neurologist. Lately I have not been able to concentrate on my rls meds/tx because other med probs got in the way and he also had personnel changes in his office.But I will see his new nurse practitioner soon and plan to get my 'rls show on the road.' I normally don't ask or use pain pills except briefly after surgery but would like to have some on hand not for daily use but when I feel worn down from the chronic pain/lack of sleep and extra anxiety over my med problems and feel I need a break. I'm a little nervous because though my records show no'drug-/seeking behavior /abuse etc. the US is on a tear about opiate use. We do have a big problem with addiction here but unfortunately our new administration, in its infinite wisdom, doesn't seem to understand there are patients who really need pain meds and can use them responsibly.

[Joolsg]

Hi Jessicado,

I have severe RLS and I also have Multiple Sclerosis. About 30% of people with MS will also have RLS, usually because of lesions ( scarring) in the lower spinal cord. There is a familial link with MS ( but it's not hereditary). My aunt died from MS, my sister and cousin also have it and my daughter has, thankfully, just been given the all clear from MS ( she had anaemia which mimics some MS symptoms). My other aunt does not have MS but she does have RLS.

So, just because you have RLS does not mean you will also develop MS. Most people on here do not have MS. Conversely, if you have MS you have a 30% chance of developing RLS.

Please don't worry about it, as I am sure you will not develop MS. Even with a close family relative with MS your risk is only slightly higher. If there are a lot of auto immune diseases on both sides of your family (as in mine ) the risk is slightly higher still, but still below 3%.

In the UK, it's not normal practice to refer someone with RLS to a neurologist. You have to push for a referral and even then, there are very few neurologists with sufficient expertise to treat it properly.

I don't know if that's the same in the USA. Hopefully some of our American cousins will pipe in with relevant info.

In your case, with the strong family incidence of MS, it would be worth asking for a referral to a neurologist to rule out MS and put your mind at rest.

( I'd rather have MS any day than severe RLS. My MS drugs have stopped all attacks - but not the disability. My RLS drugs help but don't stop the horrible creepy crawly feelings or the sleep disturbance)

Let me know how you get on,

Sending positive thoughts your way,

Jools

[Retren]

Jessica do a neurologist is the doctor to see for RLS they may also specialize in our condition if one is lucky.I would advise you to consult someone knowlegable about your symptoms if only to get peace of mind and help.

[lorrinet]

I saw a neurologist around 15 years ago. He told me it was all in my head, although stressing that it was very real to me. He likened it to 'hysterical blindness' and prescribed Prozac. He wasn't even NHS, I paid an arm and a leg privately for that nonsense! Soon after that I found an article in a magazine about RLS and realised that I was not alone with this horror and it actually has a name!

[Hidden in reply to lorrinet]

And now we know that Prozac and other SSRI's can actually aggravate rls.

[Hidden]

Jessicado,

Hi fellow Jessica (my name is Jessica as well)!!!

Where in the US are you located? Am asking because, although I now live in Norway, I am American and was diagnosed with PLMD (Periodic Limb Movement Disorder, which is similar to RLS) in the States. I might be able to help re who to go to.

[Hidden in reply to Hidden]

Hi Jess Good to find you again, I rejoined in Jan-also belond to the Atrila fibrillation community which has been where most if my attentiion has been focused lately. Hope ou are doing well.My new (current) user name is irina1975. Hope to hear from you, Burma