Nightwalkers Issue, Dec 2015

[ViewsAskew]

Well, our very own Rustsmith in this issue! Very nice to read about him.

And, an excellent piece of new research. Of course, it's not by my computer, so I'm apt to get this partially wrong, but here goes. They studied people with early onset and late onset symptoms - Early = before age 45, late = after age 45. They found that the brain was quite different. They hypothesized that there these two types are inherently different. Something we've said here many times. My guess is that we will make further differentiations over time.

Here's to a new year of excellent research that uncovers more important clues, leading us to better treatments.

Oh, and the research was funded, at least in part, by the RLS Foundation. I know we're not all in a position to donate, but if you can, please do. You'll get the excellent Nightwalkers - loaded with interesting info - every so often along with the comfort that you're helping the Foundation fund research that will eventually ease this nightmare for all of us.

[Rustsmith]

Ann, you have received your copy before I have! I saw what the page layout looks like, but I am still waiting to see the rest of the issue.

As for the age issue in the research project, I was asked by Dr Ondo when my symptoms started. He said and have since seen elsewhere that onset before age 40 tends to be genetic where onset of idiopathic RLS after 40 is simply bad luck due to some sort of non-genetic sensitivity.

[Yankiwi]

I got mine today, all the way to New Zealand! After reading and re-reading an issue I take it to my doctor's surgery and I can always download a copy later if I want to read it again.

[Polar Bear]

I haven't seen it yet.

"Onset before age 40 tends to be genetic" - That's me, and yet I've never known of anyone in our very large extended family who suffers from RLS/WED. (Paternal grandparents had 9 children, some of whom went on to have large familes, Maternal grandparents had 2 children)

[badnights]

maybe you're adopted

lol - just kidding!

[Rustsmith]

Betty, all I had was vague memories of my father showing signs of symptoms that I now see in myself and can relate to RLS/WED. Then last summer I paid one of the genealogy companies to run a genetics test. Their results were not 100% complete for all six of the identified RLS/WED genes, but I found that I definitely have one of the genes and most of another four of the remaining five. However, reading a bit further they advise that having the genes only provides an increased probability of getting RLS/WED, not that you will have it.

[debbluebird]

Mine started in my 30's. My sisters told me they had it, but it didn't wake them up. Their husbands knew and witnessed it. Also our Aunt.
All I know, it's a pain.

[ViewsAskew]

I've had PLMs since I was a toddler and RLS/WED since my teens. But, no surprise as everyone directly related - siblings, uncles, mother, grandmother - on my mom's side - has RLS/WEd and my dad had PLMs.

[badnights]

I've had creepy legs since I could formulate sentences, young but not baby, I think. Neither parent will admit to having it (though most of the crap seems to come from my poor mother's side). Both brothers have it mild and intermittent, one so mild that his sleep is only interrupted if he takes antihistamines. My sister has vivid unpleasant memories of it from each of her three pregnancies. So they can all extrapolate and understand, to some degree, what I go through.

Personal whine moment - I don't even understand what I go through, not really. I was upset with myself today for saying out loud "oh my god I'm tired", because - face it, I tell myself - I'm ungodly tired every moment of every day, and my only hope is to avoid thinking about it as much as possible. Saying it out loud is counterproductive. But that wave of tiredness rears up and swamps my brain, so that I can feel nothing else but how godawful tired I am. I slip up and say it to myself at least once a day. Similarly, I curse WED once every day or two. Since I'd be much happier if I didn't pause to acknowledge these things, I stop as soon as I catch myself at it, but I feel very bitter in the second before I do.

[Polar Bear]

Reading Beth's 'Oh my god I'm tired'...... and avoiding thinking about it.....gave me a lightbulb moment.
Is it weird that in all the years 30+ that I've had RLS I have hated it with such passion but I don't recall saying I wish I didn't have this disease.

[badnights]

It's probably a reflection of your much better attitude toward life than mine

[ViewsAskew]

Repression isn't acceptance, and not thinking of something isn't repression...for whatever that is worth!

[Yankiwi]

Homeopathy article in Nightwalkers
To put it mildly, I was surprised to see the article on Homeopathic Medicine in the Fall 2015 issue of Nightwalkers. Thinking I must have missed something, I searched “homeopathy” on the discussion board and just about every post agreed with my opinion—homeopathy does not work—at all. It is impossible.
Although the article is under a heading of “Complementary Corner”, and doesn’t actually say it will work for RLS, I think publishing it bordered on the irresponsible.
If homeopathy worked and someone wanted to get drunk, all they would have to do would be to dilute their beer 500,000 times. Sounds crazy, right?

[badnights]

I, too, was disturbed - actually angered- by that. I already, a year or so ago, expressed my opinion to the Foundation that the column should stick to facts.

One of the Foundation's surveys showed that readers want more discussion of alternative and complementary treatments. I assume that readers want an honest discussion of the state of knowledge - which treatments work, which don't, which ones there's no evidence either way - but the editors seem to have misinterpreted it to mean that readers want to hear fairy tales.

The truth is acknowledged but it is buried in the middle of the article, sandwiched by nonsense, and excused by more nonsense. To wit: " Most of the rigorous clinical trials and systematic analyses of the research on homeopathy have concluded that there is little evidence to support homeopathy as an effective treatment for any specific condition." I would hazard a guess that "Most" should be "All" and "little" should be "no", since we're talking about rigorous studies, but even without the changes, that's a pretty damning statement - homeopathy doesn't work for anything. Then why, I ask, is there an article on it in Nightwalkers?

The nonsense excuse for the lack of evidence that homeopathy works is that "homeopathic treatments are highly individualized" - this is nonsense as an excuse because those rigorous studies presumably were of individualized treatments - that didn't work.

The nonsense that wraps the truth includes verbiage about homeopathy's origins (as written by homeopaths), how to find out more, irrelevant statistics, and how to use homeopathy - all implying that it's legit.

Thankfully Norma Cuellar (the author of the article) was not willing to outright lie and say it works, and at least she admitted - buried though it is - that there is no evidence from rigorous studies that homeopathy works. But I fail to see why the article was published at all. The misinformation surrounding homeopathy is particularly dense, so to pawn it off on readers as a valid option is cruel and insulting.