Restless Legs Syndrome (RLS) Discussion Board

Rustsmith wrote: use of TNS to study RLS

I'm having a "duh" moment. What is TNS?

What is TNS?

Sorry, tt was a typo. It should have been TMS which is an acronym for transcranial magnetic stimulation.

I don't think I have seen this posted. More work from Johns Hopkins' staff, including Dr. Allen. From the lead, "Johns Hopkins Medicine researchers say new experiments using magnetic pulse brain stimulation on people with moderate to severe restless legs syndrome (RLS) have added to evidence that the condition is due to excitability and hyperarousal in the part of the brain's motor cortex responsible for leg movement."

https://www.sciencedaily.com/releases/2 ... 115526.htm

Interesting. I don’t get RLS/wed in my legs tho, only my upper left arm. I’m wondering if its the same mechanism.

Edit - seems like they addres this.

Oozz wrote:Interesting. I don’t get RLS/wed in my legs tho, only my upper left arm. I’m wondering if its the same mechanism.

Edit - seems like they addres this.

My brother always said he had RLS in his arm (never legs), and as my mom and sister and I had it, he thought that was what it was. About two years ago, he started having numbness in his arm and hand and went to a doctor. Turned out he had some birth defect in his back and had to have surgery. He has no more RLS-like symptoms since the surgery. Not saying you don't have it! Just thought of it when I read your post.

Rustsmith- I thought of you when I read this. It's not completely new info...and raises so many questions!

https://www.neurologyadvisor.com/moveme ... le/793563/

Restless leg syndrome in individuals with Parkinson disease can be treated with subthalamic nucleus deep brain stimulation, according to a study published in Neurology. This improvement shows evidence of long-term efficacy and can be sustained even with reduced dopaminergic therapy.

Ann, thanks for the link. Last time I saw my doctor said that the paper was nearly ready for publication, so not it is out. It is also nice to see that she got a co-authorship.

I keep hoping to hear from her that the team has gotten their grant funding and that they want to go with a "clean" RLS patient, i.e. me, for their study rather than continue to mix Parkinson's and RLS and cloud the question of the applicability to RLS. Unfortunately, I suspect that the medical ethics committee will opt to continue with the Parkinson's + RLS patients since they can always claim that the DBS provided benefit for the Parkinson's if it didn't work for the RLS.

I do hope that you get to do this study, for your own sake and for the future considerations of RLS.

I was able to read the full paper. It included both a review of published DBS work on RLS patients as well as a review of a number (22) of Parkinsons patients whose DBS was performed at the University of Colorado - Denver. The review found that in general, DBS reduced, but did not eliminate, the need for medication to control RLS. It also found an improvement in quality of life. The concept of placebo effect was discussed, but generally discounted since the purpose of the patients' DBS was for Parkinsons and that the RLS questionnaires that were completed were included in a large number of other forms that each patient had to complete.

For me personally, after reading the paper I think that it increases the chances that they (UC-Denver) will want the next stage of their research to be on an RLS patient who does not have Parkinsons. If that is the case, last I heard, I was the only current non-Parkinsons candidate. Now they just need to find grant funding for the surgery(s).

Back and forth...another study about a potential relationship between Parkinson's and RLS.

https://parkinsonsnewstoday.com/2018/09 ... ome-study/

Interesting that out of 16,600+ men the highest incidence of rls was 5%. I see an estimate of 10% of the population being afflicted with rls often but it does not accord with my anecdotal experience. I would say it is lower than that. I appreciate that more women than men get it but could the difference be sufficient to bring the percentage up by 5%?

I looked at the paper and they made the point that RLS is more prevalent in women and that Parkinson's is more prevalent in men. They realized that this contradiction would have some sort of impact on their results, but could not do anything about it since their study cohort was all men.

I was hoping that they would find some conclusion about how losing your sense of smell had some sort of correlation because I have lost mine. Unfortunately, they found that there was no statistical relationship to either Parkinson's or RLS.

I lost most of my sense of smell and taste in 2006, after a cold. It is frustrating.

Here is a new publication that discusses co-morbidities of RLS and appears to present a new idea about how primary and secondary RLS are really the same thing. It will appear in Lancet, but so far only the abstract is available.

https://www.sciencedirect.com/science/article/pii/S1474442218303119

My goodness.