Restless Legs Syndrome

16,062 members • 10,161 posts

Multiple Sclerosis & RLS

I was recently diagnosed with MS and am curious if anyone in the group has both conditions? I have been an RLS sufferer for over 25 years with full body symptoms that affect me 24/7. I am still waiting on a referral to an MS doctor so I’m doing research on my own at this point. Anyone heard of RLS being a symptom of MS? I’m really hoping there is some connection and that my constant creepy crawly sensations will subside once I begin MS treatment.

Thanks for any input to may have!

5 Replies

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MS certainly doesn't seem to be fair.

If having Restless legs was not enough to be ladened with, some of us are dealt an extra hand and expected to be able to deal with it as well.

My second disease, that I am expected to be able to deal with successfully is bipolar. I only got the diagnosis a couple of months ago so I'm still learning about it, but Jesus ..... isn't just the one ailment enough to be expected to take on.

Hi divas mom

I have had MS for 25 years and RLS for 22 years. I think the RLS is caused by scars in my spinal chord.

It is the worst MS symptom of all for me and I’ve had every possible symptom including the very rare ones.

It is estimated that 30% of MS patients will have RLS as a symptom.

I’ve been on Tysabri since 2009 & it stopped all attacks of MS but it can’t repair damaged myelin. So I still have severe RLS.

I’m not sure MS treatment will make any difference to your RLS but as we are all different you may notice an improvement.

Are you on any meds for the RLS?

There are a few others on this forum with MS andas far as I recall, their MS meds didn’t make a difference to their RLS either.

Jools

After many years and many drugs. What works for me is 5mg Methadone twice daily and a 1mg Neupro Patch once daily. I am very fortunate to have a doctor that will prescribe methadone for RLS as most Neurologists will not. I have been on the same dose for 2.5 years and it works well to control my severe RLS symptoms. I have not yet seen a doctor for the MS as I was only diagnosed last week and must wait for my insurance to approve a referral.

I’m so sorry that you have to go through that on top of having MS.

I presume you’re in the USA?

Here in the UK we have free healthcare.

Hope you see a neurologist who recommends a good DMT and that your insurance covers it.

Methadone works well for RLS - here in UK I don’t know of anyone who has been prescribed it for their RLS. Doctors are still catching up on latest best treatment for severe RLS.