I am finishing up on my study on restless legs syndrome and stress and pain hormones. We have 34 RLS sufferers and 32 control and our goal is 40 in each group!! We are finding our most interesting results in men with RLS, so I am making a push to recruit more men with RLS. A number of persons from this group have participated. We are looking for individuals with moderate to severe primary idiopathic RLS (at least 2-3 times per week with sleep disturbance) who do not have other disorders such as kidney disease, multiple sclerosis, Parkinson disease, or severe neuropathy AND who are not currently taking medicine for RLS. Low dose gabapentin (up to 1200mg) or marijuana is OK. Or if one is willing to temporarily come off of medicine. If you believe you are eligible or have any questions about the research, please contact our study team led by Dr. Brian Koo, MD. Your first contact can be via email brian.koo@yale.edu. In your email, please provide your phone number. We reimburse up to $600 for travel. My faculty profile so you know this is legitimate.
I’m not the study designer, I’m just another RLS sufferer passing along the word. The $600 may not be enough, do you have RLS? How much would you pay for a cure?
To be honest, with the help from most on here and myself. I’ve pretty much got my RLS under control without any medication.The downside of that my depression and insomnia are out of control.
I would happily pay for the travel myself if I had access to funds but I don’t.
Cure is a strong word. I’d settle for a decent treatment. What makes you think Koo is working on a treatment/cure, rather than a bio marker for RLS? I would love to know why men make better Guinea pigs for this study which I reviewed just now for a little while.
So it sounds “to me” like the focus is on a hormone called a-MSH which, like a lot of hormones (and iron levels), has a circadian rhythm and rises during the dark, per a 2008 Koo paper: europepmc.org/article/pmc/p....
His paper aside , its a frickin great hormone!!!. Thank you Mother Nature. It’s anti-inflammatory and anti-microbial. Never heard of it until just now.
Sounds like melatonin, as well as a human protein abbreviated ASIP, antagonize/inhibit a-MSH. Or maybe “antagonize” is a bad word. Maybe YIN/YANG is better. I read that they’re looking at a-MSH agonists to help with CFS in MS patients.
There are some old articles (25 years ago) that indicate that dopamine from our D2 receptors has an inhibitory effect on a-MSH. As an RLS sufferer, you know that our D2 receptors are pathetic. So I would imagine Koo is finding increased levels in us RLSers. It’s like a house of cards. Move one card and the whole house could fall. I’m sure our pathetic D2 receptors affects a whole host of bodily chemicals, not just a-MSH. Actually, now that I think about it, the circadian rhythm of a-MSH makes total sense!!! Iron and dopamine levels fall at night, in all humans. So if the dopamine released from our D2 receptors is the rate-limiting factor, then of course a-MSH will rise at night…in everyone. Just more so in us with RLS. I tend to think of a-MSH as being more stimulating so I can see why it’s balanced out by melatonin.
I don’t envy Dr. Koo, he has a long road ahead of him from what I’ve read. And like I said before, I’m not sure that he’s even looking for a treatment, let alone a cure, in this regard. At best, he might be looking for a good bio-marker for RLS…meaning elevated a-MSH…that will lead to the first lab type diagnostic test. We really don’t have that right now for RLS - that I know of.
Elevated a-MSH also has implications for RLS and cardiovascular disease per the description in Koo’s clinical trial summary. Though from what I’ve read, RLS patients do not have increased levels of certain substances, such as cortisol, which can lead to cardiac events. People with Widespread Pain and stress show these increased biomarkers, independent of RLS…from what I read. Also, if I’m reading some other articles correctly, a-MSH is cardio-protective!!! Yay for us with RLS???
I wonder if Dr. Koo would share his hypothesis. I haven’t seen a paper written by him on this precise subject since that above 2008 paper - that’s why I’m wondering if he would share. The 2008 paper was very non-specific in terms of his ultimate goal. The cavalry isn’t coming (that’s my favorite cliche). If we on here don’t take this journey with him, as researchers, not just Guinea pigs, it is unlikely we will live to see the results.
I wonder if Dr. Koo is thinking that an a-MSH antagonist might help us? I wonder if he is looking at that SHU9119 drug for us with RLS?
A very recent article points the finger at elevated a-MSH as a possible cause of Parkinson’s, or certain symptoms of Parkinson’s, so I can see why RLS is thrown into the mix. The problem, as you may know, is the age old one. Which came first, the chicken or the egg. Based on my incredibly limited amount of research, I’m pointing the finger at our lousy D2 receptors as coming first, as well as in Parkinson’s. If I’m right, which I’m probably not, then you should be able to test the a-MSH level of a DA-free RLS patient (via a clinical trial) and then retest after the subject is given a DA. I predict a-MSH will be lower post DA. Then the question is—instead of giving RLSers a DA, can we give them an a-MSH antagonist?
I couldn’t find a single natural a-MSH antagonist, outside of melatonin, which we with RLS can’t take. Maybe possibly that SHU9119 drug?
Well, if nothing else, Koo has given us another reason to give intermittent fasting or severe calorie restriction a try—to lower our possibly abnormally high a-MSH 💫🏃♀️👏
Don’t get me wrong. I think a-MSH is a great hormone. But like all good things - in moderation/balance. I, for one, would be willing to give a natural a-MSH antagonist a try. It should work almost immediately like a DA, right?
I think I am eligible. I take gabapentin 3oo mg 3x daily. With that and stretching and exercise, I find rls is under control. If not, it can be horrible!Thomas
Sorry. It's just that you said: if one is willing to temporarily come off of medicine, and I wanted to caution about doing that. They would need to come off it slowly and it could take some time.
Oozz, can you tell us a bit more about the study of dr Koo? Or do you have a link to further information. Stress and pain hormones is still very general, and interesting results in men very vague. There must be a specific question and approach. And I know that dr Koo is a well respected researcher of RLS. So, we would like to know more. That would give us more impetus to see if we can contribute.
Also, this is a UK based forum with mostly people from the EU, but many from all over the world. Given that dr Koo is in Connecticut apparently, I assume he has tried to get more people with RLS to participate in his study through rls.org. Dr Koo is on the scientific and medical advisory board of this organisation.
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