Nerontin

[Mellencamp]

Hi all. I have just been diagnosed with RLS which I have had for 15 years. My mother still has it. I have been subscribed x6 per day Neurontin at 100mg supplemented at night by x2 Solpodol 500mg. This is giving me a nights sleep for now. It is really reassuring in a way to know what I have and that other s have it too. Have lost count of treatments injections scans that I've had over the years all to no avail In the end I had to self diagnose and ask for the above drugs. Good luck to you all.

[Hidden]

Glad after all these years you are now taking meds that are giving you relief.

[Annie55406]

My mom had RLS, too. I remember when I was MUCH younger, and my mom would describe it to me. She would ask if I ever had problem with my legs being restless, and of course I said 'No." in sort of a distant, uninterested response. Little did I know what she was talking about. She has since passed on, but I I feel so BAD now that I was not more sympathetic and understanding. And then I just recently remembered that my dad could never go to movies be cause "he just couldn't sit still. I think he must have had RLS, as well.

Now I realize why I have such bad case of it. It came from both sides of my family !!

Is there anyone else here that can see from their own experience that there is a genetic link through which they got this abnormality ? I am curious how much of this can be traced back to genetics and people such as parents who had / have it.

Is anyone else in the same genetic boat as I am ?

Sorry for the L - O - N - G post !

Annie55406

[Pippins2 in reply to Annie55406]

Yes Annie,the genetic type of RLS is known as Primary RLS and accounts for approximately rwo thirds of cases.The rest are known as Secondary RLS and come from non genetic causes eg pregnancy,kidney disease,low ferratin iron,medications etc.The scientists have now identified 3 of the genes responsible .Mine is the genetic type

[Annie55406 in reply to Pippins2]

Wow ! you are very knowledgeable about all this. Thanks for the education ! That is very interesting.

Annie55406

[Windwalker in reply to Annie55406]

All the population of Iceland, Most of the Caguns in Louiseana, U.S.A. Most French Canadians, most Eastern European Jews and most Applachians in the U.S.A, are either carriers or have the condition. Evert 100,000 births there is a mutation, some good, some bad. This one is about 5000 or so I'm told, yrs old and the first person to have it was a woman of Eastern European Jewish extraction and we are all descendants of her. So if we are genetically teated we would find some connection to her.

One of my sons had the genetic test (23 and me) and it came back that we are a small percentage Askenazi Jewish. I traced our family ancestory and found I had two Great Grandmothers who were Jewish when the married into this WASP family. thanks to Sarah Glassman most of us have RLS. Yes it is genetically inherited.

[nightdancer in reply to Windwalker]

And, where did you find this out windwalker. is this your OWN family's geneology or are you talking in general?

[Windwalker in reply to nightdancer]

There are 5 groups of people worldwide that have most of their members afflicted with the malady now known as Willis-Ekbom disease.

Jews from or of Eastern European descent. Cajuns in Southern Louisiana, French Canadians, Islanders in Iceland, and Applichians from the plateau, in The U.S.A. Each of these groups has DNA testing for An Eastern European Jewish ancestor.

Every 100,000 births has a major genetic mutation. Some are good, some are bad and some not either and not detected unless you know how to look.

I didn't just one day decide that the forgoing were facts. It was observed by several genetic investigators.

Iceland was settled by 11 families who make up the total population of today.

The other groups have been isolated in a geographic location for hundreds of years and intermarried for that whole period and have become close relatives even when they are social strangers.

Each one of these groups didn't need but one member who had the genetic mutation.

My Grand Daughter is a DNA researcher and has taught me some of what she knows and before she had her Masters in this field and is working on a Phd in Europe. I already had an interest in the field and it is all we talk about when she id here in the U.S.

[NorthCarolinian in reply to Annie55406]

Both my mother and my grandfather (mother's father) had restless legs syndrome. Genetics are definitely a large factor in my family. Thankfully none of my grown children inherited RLS from me--so far, anyway. Best wishes to you.

[Annie55406 in reply to NorthCarolinian]

None of my grown children have it now. However, my RLS came when

I was middle aged. I hope this does not happen to my kids as they grow older !

[nightdancer in reply to Annie55406]

70% of all RLS is genetic, and that is called Primary RLS.

[Altair]

I've had it since being a teenager (I'm now 68). My Mum also had it but curiously didn't realise it until I described it to her as an "lnside itch you couldn't scratch"

[Annie55406 in reply to Altair]

Mine did not come until my late 60's. Guess I was very fortunate on that !

Annie55406

[mygacky]

I'm 68 years old and I don't remember when I didn't have rls. I thought it was just normal as most of my mother's side of the family have it. We used to call it "tickly legs". Family members who didn't have it always said it was "all in your head". I was in my late twenties when I found out what it was. Originally it was just in my legs, then also in my arms, and now in my whole body. I just got a formal diagnosis and started taking meds this week.

[Annie55406 in reply to mygacky]

I hope the meds help you. There has to be some way to get relief from this

disgusting disorder !!

[Hidden]

I have Primary RLS, so mine is inherited from my father, he of course didnt know what he had or had treatment for it. I doubt back then his doctor would have known much either. My brother also suffers. Mine started in the teens, but was very mild, Since i retired is has become worse as RLS is progressive. I told my doctor i was having RLS symptoms as having witnessed my father thumping his legs i KNEW what i had. As pippins has said there are two types of RLS Primary and Secondary. Also you might have/had a parent that didnt show any signs of having RLS. but still passed it on to you.

[Windwalker]

The first 50 times I complained about the RLS symptoms, the doctors schrugged it off as if I'd said I had a runny nose. It wasn't until I stopped her from talking and said ,''I can't take this feeling any more. I am at the end of the road, Do you understand?''. She finally listened and started some inquiry as to what treatment was available. When someone accidentally stumbled onto the fact that the meds. developed for Parkinsons had some effect on the RLS, which is a misnomer in itself, it should be called Restless Body, Arms, Hands and Lesgs. All the meds they have works for a while and then you have to find something different. If you are really lucky, you'll have a doc who knows this is a very serious condition and has to be dealt with.

Most Alcoholics and serious drug addicts, are RLS sufferers who didn't get what they needed, It is a genetic inherited disease that 10% of the world has and a small percentage are getting the attention they need. My own mother and 7 of her sisters were sufferers. The Last sister is 90 yrs old and in a nursing facility and shakes like a leaf all the time, 24 hrs a day. She is very religious and prays for death to stop the suffering.

She refuses to take anything for it because it makes her a Zombie,''her words''.

I am almost 79 and a doctor told me recently that I have the type of heartbeat and blood chemistry of a person who will live to be very old…..he thought that was good news, but then he was a calm, very still person.

Good luck keeping this ''Back Dog'' at bay.

[Mellencamp]

My doctor told me, be it right or wrong, that RLS can only be passed on by the female I.e. Your mother. I'm currently taking Neurontin and Salpodol. This working for now and my fingers are crossed. What amazes me as a person who has just after 15 years of suffering been diagnosed (by me via the Internet) is how little is known about the disease. More must be done to publicise the problem. But how?

[nightdancer in reply to Mellencamp]

The female part of that is very wrong. I have managed RLS groups for almost 2 decades and it is just as many men that pass it on as the women.

[Hidden in reply to Mellencamp]

Sorry your doctor is wrong. My father passed the gene to me and my brother.

[Kaarina Administrator]

Hi Mellencamp

There is a tiny charity (rls-uk.org) which tries its utmost to promote awareness but it is often a thankless task. We soldier on though. You can become a member and support the cause that way and if you have any good ideas how to get the word out there about RLS and the pain and suffering it causes, not only to the person but their family too, do let RLS-UK know. We are grateful for any suggestions