How many people here have family members with RLS/PLMD also?? There is a strong genetic link in lots of families.

[nightdancer]

The genes can be recessive and just passed on, but for example, I have 2 sisters, 2 nieces, and my oldest niece's kids (6 and 9) who all have RLS and PLMD. I know some here do not "believe in genetics" but the studies have been done and the genes have been found and named. There is no genetic testing yet for it, though. But, 65% of RLS cases are genetic in all the scientific information out there on this subject, meaning Primary RLS. Secondary RLS can be linked to certain causes, like low ferritin, and many other things. When we get to the point where we do have genetic testing for this, it may answer lots of questions.

[thedragon]

There has been genetic testing for years now!

[nightdancer in reply to thedragon]

There is no specific genetic test for RLS. there has been genetic testing for decades, but not for RLS outside of a "controlled study". It is not like you can go to your doctor and ask for the "RLS genetics test" Google it. And, thank you for sending that link to the study in, for people who have not seen this. I read it when it first came out almost 3 yrs ago, and did talk to one of the doctors who participated in gathering the data for this. So, I know it was all controlled and that no basic genetic test has been formulate yet, because of all the different genomes that popped up during this, some they did not expect. But, thanks for your input. I am sure people will read it with great interest, I was simply asking how many people here have a relative or relatives with RLS, since about 60% of all cases are genetic. For example your family, dragon, has a few cousins with RLS, that I know of, and probably many more in your family.

[thedragon in reply to nightdancer]

Maybe you should google it!

ncbi.nlm.nih.gov/pmc/articl...

[Hidden in reply to thedragon]

VERY INTERESTING, THANKS FOR THIS XX

[nightdancer in reply to thedragon]

I read this, all 42 pages of it yesterday and I have before since it is almost 3 yrs old. It was a huge study, involved many volunteers Sweden, Germany,. Canada, the US, and on and on. You seem to be missing my point. YEs, there is genetic testing and sampling in "controlled studies" like I said before. HOWEVER, as good as study was,. and it is the best to date, there is no genetic test available in the context that you could ask to have genetic test done on you or me as a patient. All of the genetic testing was done in dozens of countries, compiled and put together in a controlled study. When I say there is no genetic testing for RLS, I mean you cannot go to a genetics counselor , and ask for the "RLS test". There is not one that exists outside of a controlled study. This is the best genetic study ever done, most likely, but still does not say that there is genetic testing for a regular RLS patient off the street.. IF you read all 42 pages, it said there were a lot of false positives, and other issues. So, yes, they CAN do genetic testing in a controlled study to further research and possiby a cure or a better understanding of RLS and it's epidemiology. But, there is NO test for us regular RLS patients yet. IF you like I will email Dr. Winkelmann . HE is only a few miles from me, and was one of the practicing doctors who put this study together. He has a great RLS practice, but is spending most of his time with research now. I met him at the big conference in Boston in the US a couple years ago. He said he WISHED there was a genetic test in an office setting, so that they could test kids and their parents. Lots of time was spent on that subject at the conference. So, no, there is still no test you can ring up your doctor for and ask for it.

[thedragon in reply to nightdancer]

Well you are missing my point. Your original post is misleading.

[Willie416 in reply to thedragon]

As has been said, there is no genetic test available as of yet for RLS. I did not find the post misleading at all. And, the link that was sent in by someone else shows genetic testing has been done only in scientific controlled studies, which also proves the point that there is no test you can ask your doctor for yet. That is what was meant and that was obviously clear. It was explained what was meant and that should be good enough, and new people do need to know this. I see a pattern here, where 2 members ,especially, post things that are not meant to be argumentative, but to be helpful. They obviously know what they are talking about, and it is quite clear that certain people want to try and cause issues with them, and only them. It is very off putting, and when one or two members constantly criticize another member it is really obvious what is going on. I, for one, as a member who does not post much, would appreciate just reading the information that is provided that is reputable and true. I am not interested in information that is not credible. And, I can certainly tell the difference. The ones that always have the last word do nothing to further their reliability. I can see it happening once or twice, but it is constant. I am sure the ADMINS are aware of this situation, and it goes back to the rules again and respect. One does not have to jump on every word another one says every time, and pick apart every word that is said, especially when it proves no point at all. Support, Support ,Support. We are all suffering from this together, and are extremely sleep deprived, so I do not understand the attitude that is quite apparent from some here. As far as my family goes, my partner does also have RLS, and we both have siblings with RLS, and parents, (he has one, I have one) with RLS, and most of us except for me, have PLMD also. So, the genetics are there. We are planning on adopting a child , so we can at least feel safe that we will not be the ones that will pass it on to her. I hope the child does not have the gene already, but she does not show any so far from what he and I can see. She is 9, and the papers will be signed soon, and legally we will be a happy 2 Daddy family. Very excited about that! and HAPPY.

[Hidden in reply to Willie416]

Just to say. Wonderful news..!! I bet you and your partner cant wait to have that little girl in your lives.

[thedragon in reply to Willie416]

That is lovely to hear....happy New family!!!!! Best wishes to you !

[nightdancer in reply to Willie416]

I am very happy for you, too. Great news to see the good things today.

[nightdancer in reply to thedragon]

I believe my post actually agrees with this study. not sure what you mean by misleading.

[Jaynielynne in reply to nightdancer]

If you are talking about cousins. There would be 2 nieces, a cousin, brother, sister, dad..grandpa. We didn't have the same exact symptoms. Some kicked while asleep and most had the urge to move.

[Hidden]

My mother had RLS/WED in arms and legs, she died before mine started. My grandmother thought that my mother got it from mercury in her tooth, the dentist did a massive work with mercury in her mouth when she was pregnant with me, but I do not know what to think about that.

[Hidden in reply to Hidden]

Imagine when those fillings start breaking down in our teeth.

They all do.. we get some mico-leakage from that happening

and that's how fillings turn into crowns... The mercury is

poison to our body. When fillings break down, we get a new

exposure.

[Hidden in reply to Hidden]

I replaced all my fillings with cheramic crowns ( do not know the proper english name) 13 years ago, it was done by a dentist specialist and took over a year. It went very well out.

[nightdancer in reply to Hidden]

For this one, all I can say there is no medical evidence to back that up. RLS has many secondary causes and theories, but mercury would way low down on the list, if it was at all. Who knows, but so far no evidence proves that. They used to think all kinds of things about mercury years ago. If you all had it, it looks genetic. That has science to back it up. there are many many things too look at , though.

[Hidden in reply to nightdancer]

I took out all my fillings due to a all around sickness feeling and weakness. Do not no the english name and can not find a translation for the swedish name of this condition, but I was all burned out. Just a few days after the last filling was gone I felt like newborn or reborned.

I could go back to life and work for an extra ten years until my RLS got worst.

[nightdancer in reply to Hidden]

I am glad it helped you. Do you take any meds for your RLS? When you say your RLS got worse, how much worse did it get and di you have to start meds? Very interested in what you have to say.....we never know.

[Hidden in reply to nightdancer]

I've been taking meds for 13 years, Various dose of pramipexol. When it got worse 2 years ago it suddenly started to pain for 24 hours/day instead of just evenings and nights and it was pain in both arms and legs and some very painful kicking/jerking in my legs. And pramipexol did not help me any longer even if I tried to take less pills. Since 2 years back I'm on morphine for the pain and 0,09 mg pramexipol for the kickings, in october I'll get a spinal morphine pump, then I do not need to take higher and higher dose every other month.

[Daragh]

Extract from National Sleep Foundation (U.S.A.) which may be of interest:

RLS runs in families and may have a genetic component. In a recent study, the first RLS gene was discovered and was shown to account for approximately 50% of RLS cases. However, the researchers who identified the RLS gene cautioned that having it does not guarantee RLS. Rather, there are likely to be medical, environmental or other factors involved in translating RLS genetic susceptibility into RLS symptoms. Another recent RLS study also found that a genetic variant may account for about half of RLS cases and revealed an association between RLS and a gene for limb development, suggesting the possibility that RLS has components of a developmental disorder.

RLS also affects about 2% of children, according to a recent study of more than 10,000 families in the U.S. and U.K. The study also found a strong genetic component to RLS; more than 70% of children with RLS had at least one parent with the condition. There is also evidencesuggesting that children with attention deficit hyperactivity disorder (ADHD) and a family history of RLS are at risk for more severe ADHD.

RLS affects both men and women and can start at any age. It may be confused with growing pains or restlessness when experienced by children. In addition, the severity of the disorder appears to increase with age. Older patients experience symptoms more frequently and for longer periods of time.

The exact cause of RLS is unknown but it has a primary form, not related to other disorders, and a secondary form related to an underlying condition such as kidney failure, pregnancy, or iron deficiency anemia. It may also be caused or made worse by certain medications. This is considered secondary RLS. When no other cause is found for RLS symptoms, it is considered a primary disorder. Primary RLS accounts for 40-60% of RLS diagnoses.

[Hidden in reply to Daragh]

Children would have a most difficult time explaining this

rls stuff. I do believe that I did have it as a child. My teachers

used to punish me for getting up to walk when I couldn't

stand it anymore. I used to get up and go sharpen my

pencil, ask to go to the washroom. They sent me to counseling

in about the 8th grade to find out what was going on at home

that caused me to have to move, wiggle, bounce my knee,

legs during classroom time. I was scheduled an extra

gym (physical education) class to work off some nerves

and to get a -hold of my anxiety that was making me do those

things.

The worst thing that happened to me as a child is that one

of my mother's friends told her that I had some kind of

worms that were making me hyper and unable to sit still..

so my mother did get a treatment of these little orange pils

that I had to take to get rid of the worms.. I don't think that

I ever had the worms that my mom was sure that I had.

I was called "The nervous kid" by my father and grandparents.

Now I am still the "nervous girl" in my parents family...

Only recently my brother showed signs of the kicking part

of rls... I offered him some Worm medicine. haha. ..

I am now 46 yrs old. Long gone are the days when mom's

could just call the doctor for a medicine... also as a kid, I

had mega antibiotics....whatever ailed me, I was given

the pink flavored (bubblegum) antibiotics. I have no idea

why my mom and doctor did this...

[nightdancer in reply to Daragh]

Thank you for this, Daragh! I am sure that the RLS-UK and the US RLS Foundation would know if there is a genetic test that a patient can ask for, outside of a controlled study. Thank you for clarifying Primary RLS and Secondary RLS,. Lots of new RLSer's may not even know about the genetic factor, so it is important information. There are new people every day finding this site and others looking for answers, so we owe them factual information. The big study that was done is the largest of its kind and I am quite familiar with it, as well as the doctor from Boston who helped head that huge study was posted above. Genetic testing, so far has only been done in controlled scientific studies, so we need to make that clear. They have also studied one big family with 77 members, and I have not read that one for a while, but it showed that RLS ran it in that family and was one of the first official studies on genetics and RLS.

[Hidden]

the genes are BTBD9 and TOX3, There is a third one but i cant recall it, so YES we know about it

[nightdancer in reply to Hidden]

Maybe you know about it, but I am sure not everyone does, so this is an informational post for people who may not have read as much about RLS research as you have.

[Hidden in reply to nightdancer]

ok, my cousin has rls, i have rls, my nephew, my cousins son, my 2 aunt's had it, my sister, her daughter, her son, my brother, my dad, my uncle, and we are sure my 2 grandmother's had it, allthought not diagnosed, the signs were there, my son and his daughter all had it, so yes it sure is genetic

[Kaarina Administrator]

No one in my family that I know of.

[Hidden]

I have Primary RLS, mine is inherited from my father, i also have a brother who has RLS. Good information given on the genes, and on Primary and Secondary RLS. Not everyone will know this.

[hairyfairy]

I don`t know of any family members that could have given me RLS, but it makes a point about genetic testing, I think that it should be offered to anyone who`s thinking of having children because then they would know exactly what they might be handing down.

[Hidden in reply to hairyfairy]

My father had it and now my son has it.

[Willie416 in reply to hairyfairy]

That will be nice when they develop one. They have done great things with genetic testing, like being able to test for the breast cancer gene, for one example. And, when there is one for RLS, I am sure everyone planning on getting pregnant should want to get one. That way they would know for sure.

[Daragh]

It may be 'common knowledge' to our more frequent forum users but will be completely new to many who have come here looking for help!

[thedragon]

so they HAVE genetic testing for humans!

[nightdancer in reply to thedragon]

in the studies

[thedragon in reply to nightdancer]

Well that's pretty random after 9 months...thanks for that!!! Are you bored nightdancer!!! Ha ha

[nightdancer in reply to thedragon]

never am bored, and was looking at posts about familial or genetic RLS, that's all. But, I am never bored.

[nightdancer in reply to thedragon]

in CLINICAL settings.

[maesllan5]

I inherited RLS from my mother my younger brother has PLMD, 5 sisters & 2 other brothers do not suffer at all.

[Jaynielynne]

Yes, 2 generations.

[connie50]

hi night dancer just been going through the post & Came across this one, about genes, been to see a sleep DR at the hospital today 13/06/2018 when I told him that RLS ran in family's he was quite surprised, he asked me what they took, I haven't a clue.it was yrs ago. I no my sisters have it, my mother & her mother had it also my uncle had it.so to me that means it gets passed down in generations.