Important News - from Johns Hopkins

[Parminter]

New information on increased excitability in the motor cortex in RLS, and transcranial magnetic stimulation (TMS) as treatment.

therestlesslegsblog.wordpre...

sciencedaily.com/releases/2...

sciencedirect.com/science/a...

[Dakota13]

Hi Parminter, thank you for posting this interesting study. Maybe there is hope after all😊😊

Dakota

[Parminter in reply to Dakota13]

Yes - how wonderful if we could do without drugs, all of which are noxious.

[Palamino]

Wow that would be amazing if they can eventually do something. Rls is a living nightmare

[Jrskyhook32]

Wow this has me wondering what the next step could be. It is definitely very heartening and once again I thank the people who run this amazing website for providing all of us with answers we couldn’t get anywhere else. There seems to be some hope for us!! Thank God and Johns Hopkins and any and all who researched this.

[restlessstoz]

I also say WOW!!! It sounds amazing and as if there could be hope sometime! What a breakthrough. Thank you for posting this wonderful news.

[Parminter in reply to restlessstoz]

I have come to the conclusion that the more I search, the more hope I will have.

It makes me understand just how hard many scientists are working to help us.

The fact that the average practitioner is many years out of date should not daunt us - if our doctors do not read, we must.

[Hidden]

This is great news indeed. However there were other studies in 2018 which suggested other physiological causes of RLS, i.e. problems in the somatosensory area and excitability in peripheral motor nerve axons.

Sorry for putting a dampener on this, but, realistically, I wonder how long it will take to develop any new treatment based on these studies.

It's possible that WED , like jaundice, is just a syndrome, not a condition. As such is a set of symptoms commonly caused by any one of a number of underlying causes.

It does look as if the common factor in the studies is hyperexcitability in the nervous system.

Until this can be demonstrated one way or another remedies will only provide symptomatic relief and there may not be any one singular remedy.

Having said that, I would be happy to have a symptomatic remedy which was effective without the problems associated with current treatments.

[Parminter in reply to Hidden]

Manerva, yes indeed, it is a very complex disease.

But you will note that Doctor Christopher Earley is one of the authors of the paper, and if you google him you will see that he is steeped in the science of RLS - he is one of the very best.

And the paper does note that it is 'a new insight into complex neurobiology of RLS'.

Month by month new insights arise - and when the picture is complete we will all benefit.

[Hidden in reply to Parminter]

Thanks, hopefully, there are guys like Dr Earley who can see the whole picture and put it all together into a "Theory Of Everything" of RLS similar to the TOE physicists are looking for.

As a consequence future generations may benefit from whatever it takes to deal with this, whether it's genetic screening, genome therapy, immuno-therapy, technology like a brain pacemaker or simply new better drugs.

I doubt if I will be here when that happens.

I note that after decades of research some progress has been made with detecting and treating cancers. Part of this success has been due to screening and early detection. Early detection is as important or possibly more important than treatment.

So on a positive note.

It's important then that we should "carry the flame" for RLS. Make people aware of it and make information available about self-management strategies for dealing with it.

For example, I only just realised my wife seems to have mild RLS. She used to say she got restless in the evenings and put this down to not being very active during the day. She only recently described her symptoms in detail! She has never previously heard of it. I wonder how many others are similar.

[Jumpey]

Cheers for this.x

[Graham3196]

This is good news Thanks for letting us know.

It might take a few years to get down to being the accepted and effective cure we hope for but how do we make sure it doesn't go the way of iron? I think research found that iron was important in about 1953 (or so) yet its only in the last few years that the very high levels of ferritin have been applied to RLS patients. I'm not sure what we can do to hurry this into the GP's minds.

We might be able to help by being prepared to be guinea pigs and cooperate with trials. I have been told that a large number of promising treatment advances fall by the wayside just because there are not enough volunteers to conduct trials.

The problem might be the years of human trials needed until its found to be safe.

Pretty good news all the same and at worst it will be good for our children.

[Parminter in reply to Graham3196]

I think a little well-aimed magnetic stimulation would be a lot safer than dopamine agonists.

But you're correct, there is such a lag - the news about augmentation and DAWS came out at least a decade ago - and still our doctors, GPs and specialists alike, seem not to have caught up.

There are not many professions where you are permitted to be totally out of date, and still get paid.

[Ureshi17]

I've just started TMS (transcranial magnetic stimulation) treatments here in Tokyo. At this stage in Japan, they are using TMS for depression, chronic fatigue syndrome, fibromyalgia, Parkinsons and recovery after stroke.

I've had 3 treatments (all slightly different areas of the brain were targeted) so far and after the first I had 8 1/2 hours sleep! The other two unfortunately had no effect.

The technician has to be quite precise .. there is apparently a 2 cm area of the brain which is affected ..

There are several other studies out there on TMS on RLS, and the results were all really promising. In the research they mainly targeted either the somatosensory cortex or the motor cortex. Two of the studies used high frequency pulses and the other study used low frequency, so it's a little bit of trial and error, but promising. I'm currently having treatment on the left side of my brain, but will try the right side.

I'll try and post those studies on TMS on RLS.

[Parminter in reply to Ureshi17]

Thank you Ureshi!

Wonderful to know that it is 'up-and-running', not just a future dream!

[Graham3196 in reply to Ureshi17]

Thanks for reporting on this.

Can you please provide contact details of the organisation that supplies this service?

[Ureshi17 in reply to Graham3196]

I'm going to a clinic here in Tokyo (Japan) called the stress clinic. I'll copy the URL. There are several different clinics and hospitals offering TMS here in Japan. Also in Australia too.

[Ureshi17 in reply to Graham3196]

shinjuku-stress.com/

[Hidden in reply to Ureshi17]

Hi Ureshi

Did you find TMS effective for your RLS?

[erika13 in reply to Hidden]

Hi,

As I mentioned, the first treatment was effective. I think I had a total of 6. Unfortunately subsequent treatments didn't have any great effect...it needs to be very precise and the practitioners here use it mostly for depression on a different area of the brain .. also they use high frequency stimulation .. most of the RLS studies, I think used low-frequency stimulation ...so that could have been why.

[Ureshi17]

Here are those studies:

ncbi.nlm.nih.gov/pmc/articl...

ncbi.nlm.nih.gov/m/pubmed/2...

ncbi.nlm.nih.gov/pmc/articl...