Restless Legs Syndrome (RLS) Discussion Board

I have rls for years
Tried to stay off medication. Did get my blood ferritin levels up. Different magnesium, GABA,foot massager checked my veins and did over knee stockings etc. a lot nights got 1or 2 hours sleep. My sleep doctor got me on gabapentin. I m not to happy about it. I listen to a podcast from Matt walker where he talks about ferritin in the brain that’s the problem not in the blood. My blood ferritin is around 80. I asked my neurologist (I have a chant) and he really didn’t give an answer. Told me go to the sleep doctor who doesn’t know about brain ferritin.
I have big hopes that is the answer to rls

The RLS experts generally agree with what Matt Walker said in his podcast. Research at both Johns Hopkins and the NIH indicate that low brain iron is responsible for both the movement side and the insomnia sides of RLS. I have heard Dr Earley of Hopkins state that blood ferritin is a poor indicator of the level of iron in the brain, but that it is the only current measure that they have. I understand that research is underway to develop an ultrasonic tool that will accurately measure iron levels in the appropriate segment of the brain, but that is not something that we will probably see available for a while yet.

For some, increasing ferritin in the blood helps improve their RLS. This is why iron therapy (oral iron or infusions) are now the first line treatment. Unfortunately, about 30% of us do not benefit from increased blood ferritin. Other research is being done that indicates that those of us who have high serum ferritin and still have severe RLS may have a problem with transport of iron across the blood-brain barrier, possibly due to genetic issues with the protein that is responsible for metal ion transport across the barrier.

My blood ferritin is around 80.

80 is pretty low. People with WED/RLS are advised to try to get it up to 100