stem cell therapy?

[senders]

Has anyone heard anything about stem cell therapy for RLS? I am looking into anything that might help. ❤️

[ChrisColumbus]

There is research ongoing into stem cell therapy for Parkinson’s and MS: it would certainly be interesting to know whether anyone's heard of similar research for RLS

parkinsonsnewstoday.com/new...

mssociety.org.uk/research/e...

[senders in reply to ChrisColumbus]

Thanks for the reply

[Joolsg]

Not heard of stem cell for RLS.It is available in limited cases for MS, but it's a very serious choice as the risk of death and serious adverse effects is mentioned often.

I know 2 acquaintances who have had it on the NHS. Both survived and are doing well. Another acquaintance has been left with serious, severe health issues and wishes he'd never had it. They wipe out your immune system with strong chemotherapy first. You have to isolate completely for a month to avoid viruses/bacteria. It's brutal.

Only younger patients, diagnosed for under 10 years, qualify in the UK.

However, I'm sure developments for RLS will happen in the next 20 years.

[ChrisColumbus]

I've found that this South Carolina clinic claims amongst their RLS blurb:

"Regenerative medicine techniques such as PRP (Platement Rich Plasma injections) and Stem Cell have provided exciting results for restless legs patients".

piedmontpmr.com/restless-le...

On the other hand, when I try to quickly find details of their stem cell treatment I only see:

"Keep in mind that there are many forms of regenerative therapy that are not specifically stem cell as regulated by the FDA.

Two effective and common procedure that we offer at Piedmont Physical Medicine & Rehabilitation are adipose derived structural support cells and human cellular or tissue based products (HCT/Ps) to enhance healing and pain relief"...

[senders]

thank you fellow RLS warrior for the info. I am contemplating getting stem cell treatment but it is very expensive and no guarantee. But at this point I am at a dead end with treatment so I am desperate.

[ChrisColumbus in reply to senders]

I can see that you've tried methadone, gabapentin and recently pregabalin: I presume that you've followed advice from e.g. Joolsg and SueJohnson on how much to take, and when and how to take.

If gabapentinoids don't work (perhaps because your dopamine receptors were damaged by a dopamine agonist, or perhaps because side effects didn't become tolerable after a few weeks) a low dose opioid is the route recommended by expert doctors. Jools and Shumbah (and others) control their symptoms with low dose buprenorphine. Please see the following pinned post:

healthunlocked.com/rlsuk/po...

I haven't turned up any actual evidence that stem therapy has been used successfully to treat RLS. And I'm sure that e.g. Jools and Sue would have come across research/evidence if that was published in reputable sources. Where are you considering having this done?

[senders in reply to ChrisColumbus]

My doctor doesn’t think that the receptors being damaged would have anything to do with why gabapentin and pregabalin wouldn’t work because they work in a different way.

I am hesitant to go back on opioids because for one it’s a pain in the butt to get them and also the mental side effects were really bad. I do know that every drug interact different with everyone so maybe buprenoriphine might be different.

[SueJohnson in reply to senders]

Another one to try is dipyridamole. You might want to discuss this with your doctor. It has helped some people on this forum and another forum I am on and has completely eliminated RLS in some. In the winter 2022 edition of Night Walkers, the publication of RLS.org there is an article by Sergi Ferre about dipyridamole discussing the effectiveness of it in a 2 week double blind placebo controlled study showing it completely ameliorated all symptoms. The study was by Dr. Garcia Borreguero movementdisorders.onlinelib... sciencedirect.com/science/a...

Take it on an empty stomach. (fats inhibit absorption) about 1-1/2 to 2 hours before bed. If you have headaches they tend to disappear or lessen after around 5 days.

[senders in reply to SueJohnson]

Thank you I am going to talk to my doctor

[Keith1231 in reply to SueJohnson]

Very interesting article: I had a stroke 6 years ago and take low aspirin to help prevent blood clots. I see that dipyridamole does the same. Could this drug elevate my RLS and thin my blood, preventing a stroke?

[SueJohnson in reply to Keith1231]

It certainly would help but talk with your doctor.

[Keith1231 in reply to SueJohnson]

Hi Sue, I have an appointment with my GP next week. I sent him the article in an above post from you regarding Dipyridamole. He said it is not licenced in the UK for RLS but only for blood clot prevention. Do you know different?

While I was searching the NHS web for uses of Dipyridamole I found this:

nhs.uk/conditions/restless-...

Keith

[SueJohnson in reply to Keith1231]

Any medicine can be prescribed off label and many are. Gabapentin and pregabalin are examples.

I wish there was some way we could erase articles like that!

[nocturne]

Here's a review of Piedmont Physical Medicine, which does not sound very promising:

yelp.com/biz/piedmont-physi...

[ChrisColumbus in reply to nocturne]

Thanks - can't say I'm totally surprised, too many claims and not a lot of referenced evidence

[nocturne in reply to ChrisColumbus]

It seems that a lot of folks are trying to make $$ selling untested, unproven products to desperate RLS sufferers . . .

[Bantamdyno]

Hi , have you found your trigger points for rls🤔

[Lespenney]

I had decompression surgery done in Coloarado along with stem cells in both legs. Unfortunately. I didn’t get positive results for my rls.. Helped a bit with some neuropathy.