If one does not have the MTHFR gene does this mean he/she does not have primary Restless Leg Syndrome?

[Reb0013]

Can anyone tell me please if not having the MTHFR gene means one does not have primary Restless Legs Syndrome?

[LotteM]

Where did you get the idea that the MTHFR gene is associated with RLS? And if so, which variant of the gene?

I cannot find any info on it.

[Reb0013 in reply to LotteM]

So sorry, I should have reviewed my article for details before writing. The MTHFR is a test specifically for a gene that indicates a genetic inability to efficiently methylate Folic Acid (B9). This would cause RL. I should have thought about this before posing the question. If a person has normal B9 levels all the time no need to have this test.

[LotteM in reply to Reb0013]

Never mind,Reb. Thanks for clarifying.

[Hidden]

I have found numerous gene variants are associated with RLS and at least 8 genes mentioned.

None of these are MTHFR.

Even then some people have idiopathic RLS.

This applieso nly to idopathic and primary RLS.

There then are many causes of secondary RLS.

Can you tell us where you got the information about the MTHFR gene from?

[Reb0013 in reply to Hidden]

Yes, I agree now that I have slowed down and reviewed more information. Thank you for the reply. See my reply to LotteM above please.

[Reb0013 in reply to Hidden]

Manerva, I was wondering how long you've had RLS and if you would be able to share if you've had success with managing it with a particular food supplement or medicine? You do have a lot of meaningful knowledge on the subject matter.

[Hidden in reply to Reb0013]

Most of what I know specifically about RLS is what I've read.

I've had RLS for about 40 years, but most of that time it was mild and never really bothered me.

When it became severe in 2009 I was very ignorant about it and remained that way until 2018.

I saw my GP who referred me to a neurologist who said I had idiopathic RLS and prescribed pramipexole up to 0.75mg. He said I'd probably have to take it for life. No mention of any complications.

When I took my first dose, it was like a miracle! It crept back a bit and I was soon on 0.75mg.

The RLS gradually came back and seemed to get worse. I saw two neurologists who were of little help and two GPs who couldn't help either.

I must have suffered augmentation for years without knowing what it was nor even heard of it.

I had no thought of stopping pramipexole and in fact when I forgot to take a dose it was horrendous. I knew nothing about withdrawal effects.

In 2018 I found this site, found out about augmentation and withdrawal. I had at that time also started taking gabapentin for nerve pain. So I started reducing the pramipexole. After about 9 months I finally stopped the pramipexole. I only occasionally have symptoms, lasting a few minutes.

I have been taking gabapentin since then. I also stayed on the site and have resd more and more about RLS with the aim of helping others.

I also have other background knowledge which helps at times.

From personal experience I've only ever taken pramipexole and gabapentin.

I've taken oral iron, vitamin B12, vitamin D and magnesium.

However, I never noticed any difference with these because luckily, the gabapentin works for me.

[Reb0013 in reply to Hidden]

Thank you for sharing your story; I find everyone's journey interesting. It's also worth mentioning that if my symptoms continue to bother me I made a decision earlier to try Gabapentin because one does not augment on it and it does treat the pain as well as the leg jerking. Everything seems to be trial and error to some extent. Like you, I also have other background knowledge - worked in a medical laboratory for years before moving my career into another field of sturdy and more recently retirement. YAY! Now if I need to sleep later due to lack of sleep... well, I can. Thks again and may the calm continue!