Looking for various so called causes ... - Restless Legs Syn...

Restless Legs Syndrome
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Looking for various so called causes of RLS

Can anyone give me a list of ALL the 'causes' of RLS. There have been so many starting with lack of magnesium. I am not interested in the 'band aid' drugs we are all given but rather the suspected etiology (the cause) of RLS. Recently Johns Hopkins Hospital said it was too much glutamine in the brain. I went there hoping for "the cure." Instead they just wanted to treat me with another drug which was funded by the drug prescribed. Anyhow, can any of you add to my list of anything you remember stating as the "cause" not the band aid treatment. I remember serotonin or was it dopamine?

Who remembers other so called etiologies? I know there is some common cause. Still researching.

Thanks for help, Auntie Sioux

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Hi. Good question!

Ok. Let’s see....not enough dopamine receptors in the brain? Is that right/is that the same thing as low levels of iron in the brain/is that the same thing as low ferritin levels? Maybe a scientist needs to answer these questions?

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For me there are two causes, one is E202 artificial preservative and the other is raised blood sugar. There is a theory that gut microbes feed off sugar and starches, and give out neurotransmitters, but ingesting one of my trigger foods will bring on rls in about 30 minutes and I don't think food can reach the gut that fast. I think it may have something to do with inflammation in the nerve receptors. At the moment I take magnesium, but it's only slightly effective.

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What type of magnesium? Have you tried magnesium citrate? That is the type that has helped my RLS.

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Since I realised that high blood sugar was a trigger for me and I changed my diet to reduce it, I have had very few incidences, and then very mild when I have eaten to many high carb foods. When I finish come near the end of current stock of magnesium I'm thinking of stopping to see whether I still need it as already I've found that I can halve my dose.

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Lack of magnesium can make it a bit worse because it is a mineral responsible for proper nerve function. But it is not a cause.

Causes are gene variants that run in families, BID (brain Iron Deficiency), pregnancy and renal disease. And possibly neuropathies.

All the rest are triggers that worsen the condition but do not cause it.

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John Hopkins has also found there is hyperarousal / too much excitement in the motor cortex area of the brain. I’m sure low levels of the calming brain chemical (neurotransmitter) GABA has a part to play too.

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The compounding chemist that I heard talking about new remedies, talked a fair bit about GABA for RLS.

The other type of RLS (which I have) is idiopathic (no known cause) as both mum and dad died before my RLS started. Therefore, I was unable to see if it was "familial".

CPDB-RSL

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I am on my phone and can’t work links but if you search ‘dipyridamole’ and go to my thread ‘Dipyridamole and rls - hope?’ You will find a link to a very detailed and technical study which examines all the current information about the suspected causes. I think this is probably about the most comprehensive and up to date information.

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Yes thanks so much Kaarina

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Who at Hopkins told you that was the cause? I go to Dr. Christopher Early at Hopkins who is one of the leading specialists in RLS and that is not his belief. Nor does he prescribe any medications based on funding by a prescribed drug.

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I was following the research work by Dr. Paul Allen, PhD from the department of neurology. I actually saw Dr. Wu, same department. They both told me I would be on methadone for the rest of my life. Very glad it did not help. Mine RLS seems to be very genetic but I have it the worst. Blood serum and blood crossing the brain barrier seem to be quiet different. I am seeing a neurologist who apparently is going to give me an infusion of iron. Fingers crossed . I have basically cut all gluten and sugar, except some raw honey and seem to be doing better. I am NOT interested in band aid drugs but rather treating the etiology of the disease. Any thoughts? Thanks

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Antiesioux, we ALL would love to treat the cause of RLS and not use drugs that ‘only’ deal with the symptoms. As the real cause of RLS is still elusive, we can’t. Plain and simple. Brain iron deficiency (BID) leading to a low number of some neurotransmitter receptor on brain cells is as close to the cause as science has gotten. As it works in science, BID is currently the ‘working hypothesis’ that need further corroboration. But brain iron is very difficult to assess in live people, also hampering the study of the potential processes influencing the brain iron. Thus, we have to wait for science to move forward. Unfortunately, most studies on RLS deal with (potential) drug testing, not with the fundamental science of the processes in the brain potentially causing RLS. This study ( mentioned above by involuntarydancer) tries: ncbi.nlm.nih.gov/pmc/articl...

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Dont forget Primary RLS involves our genes.

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Correct, Elisse. However, even if you have “the” genes, you do not necessarily get RLS. How the genes relate to the low brain iron and the reduced no. of receptors on the specific brain cells is a question that hasn’t even been posed yet in the scientific literature - as far as I am aware. So, there is still quite some work to do. Unfortunately for us with raging RLS 😥

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True Lotte, i inherited mine from my father, as did my brother, but so far neither of my adult kids have shown any sign of RLS or any grandkids. They could still be carrying the gene. Thats what i mean by having RLS genetically, altho they have identified i think 4/5 genes, no other research has gone into the why's or how's they link into the low brain iron etc. or even if they do. ? - as far as i am aware of too.

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Per Dr. Early, I had an iron infusion. I was able to reduce my medication (Gabapentin.)

No one in my family, other than me, has ever had RLS.

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I have no genetic link either. Unless they hid it from others? I don’t know anyone, anywhere on both sides having issues with their legs...just me! I’m lucky that way! 😉

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I found that milk and barley are the worst things I can eat. See my post ealier about my triggers. I am now completely gluten free and lactose free.

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Hi, I have recently seen a lovely specialist who told me I have severe restless legs, I have now changed my meds, but the main thing I learnt from him is that my ferrous iron count should be 100! So I am on tablets now for the rest of my life, I am 53. He said that having restless legs you need more than other people as you loose iron, it has something to do with the brain. Hope this helps.

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Wow, ttlegs, it is SO rare to hear of medical professionals who know about the iron thing - over 100 AND the problems with leaching. You struck gold. Are you in the UK? Who is this expert?

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Hi, I know, it was such a relief to actually be told, he said that it was in my genes, my brother and my sister get it, my sister mildly, but I seem to be the worst and looks like I have passed it to my children, they get it mildly, but they are in their 20's. He said that I must have more genes related to the condition, great!!!! I saw Dr Lennox at Swindon's, Great Western Hospital. I have forgotten my tablets occasionally and the RLS is straight back, but as long as I take them, it is all good, even having a drink!!!!😄I hope to God it lasts! I have started reading a book and going to the cinema!!!!

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So sorry to hear that you also have this debilitating problem. What tablets were you put onto as you did not say.

Just to go to the movies or on a day bus trip would be great but I have felt like just screaming at times so now no bus trip for me. If the Folic Acid keeps working (only been 4 days) I will try a bus trip again with my friends.

People who do not have RLS have NO idea how it can tule your life. let alone lack of sleep etc etc.

CPDB-RLS

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For me I noticed that when I went on a diet which was a low carb high protein one a side effect was improved rls.

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That's interesting

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Interesting about the high carbs as this is exactly what the compounding chemist I listened today said - we eat too many carbs! More coloured veggies for a start! CPDB-RLS

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I recently ended my battle with restless leg. I stopped drinking most bottled water which is loaded with sodium and other things. I also stopped eating snacks covered in flavor dust. No more rls.

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Auntiesioux,

Johns Hopkins found elevated levels of GLUTAMATE, not glutamine -- a huge difference.

"The small new study, headed by Richard P. Allen, Ph.D., an associate professor of neurology at the Johns Hopkins University School of Medicine, used MRI to image the brain and found glutamate — a neurotransmitter involved in arousal — in abnormally high levels in people with RLS. The more glutamate the researchers found in the brains of those with RLS, the worse their sleep.

The findings are published in the May issue of the journal Neurology.

“We may have solved the mystery of why getting rid of patients’ urge to move their legs doesn’t improve their sleep,” Allen says. “We may have been looking at the wrong thing all along, or we may find that both dopamine and glutamate pathways play a role in RLS.”

Also, there are many other possible reasons for RLS: Low iron, low folate, low selenium, high inflammatory foods (sugars, including milk sugar).

For those who insist their RLS is genetic or familial, it may be because the entire family grew up eating inflammatory, or high-sugar, or high glutamate foods?

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One last thing: RLS is connected to high ammonia levels. Ammonia levels can be high due to gut infections and/or liver problems.

Google is your friend. :)

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