RLS & Huntington's Disease

[Jitters]

Hello,
I am new to the board. I have had RLS for more than 20 years. I have a great deal of pain associated with mine. I have been developing other jerking movements. I have the Huntington Disease dominate gene, along with my mother (whom is in her late stages of Huntington's.) My daughter just tested positive for The HD dominate gene with an allele of 37 repeat.
Another daughter is waiting for her results. We do know that we will develope HD in our lifetime if we don't die of another cause before. I don't see how I can deal with both HD & RLS


My question is, does anyone know if there is an association with RLS and HD? I have been researching , but unable to find a connection.

Any help will be surely appreciated.

[becat]

Hi jitters,
Welcome to our growing club. First, may I say my thoughts and prayers are with you and your family. What you are facing does seem every bit overwhelming, but I'd like to say you going to make it all work just fine. You find we all have our stuff to deal with, but the people here are awesome at lending a shoulder, an ear, or caring word to easy those tough days. Your more than welcome to vent and teach us about Huntingtons at the same time. With RLS education is the greatest weapon you have. Knowing more than most doctors, sometimes educating them. I suggest you read the many different post here.
The thread that will be of most interest to you, is not yet ready for the site, but is being worked on as we speak. One of our most talented members is working on a list of medications that work against RLS. Be sure to check in often, as this will be helpful for you based on what I've found on the treatment of Huntingtons.
I copied the link below and the treatment inforamtion. HMMMMMM go figure they will give you medications that make your RLS worse.
I'm not a highly educated woman, but I'm a good researcher.


http://www.ninds.nih.gov/health_and_med ... ington.htm

Is there any treatment?
Physicians prescribe a number of medications to help control emotional and movement problems associated with HD. Most drugs used to treat the symptoms of HD have side effects such as fatigue, restlessness, or hyperexcitability. It is extremely important for people with HD to maintain physical fitness as much as possible, as individuals who exercise and keep active tend to do better than those who do not.

I hope you find some information amoung our site here that answers some of your questions. Please keep us posted and feel free to ask questions, make comments, or just keep in touch.

May I mention that we are conducting our own research project here. Please, If you could.......go to General Topic and click on th PLEASE PLEASE READ MESSAGE BY JUMYOWL. You can fill out our new questionaire and help us. You can also go to the NEW TO RLS thread and find a post called NEW?CURRENT MEMBERS PlEASE HELP. We are trying to write our bio's there and then we don't have to repeat ourselves so often about our history with this syndrome. You'll find mine at the bottom of my post.
I do welcome you again.

[jumpyowl]

You wrote:

I don't see how I can deal with both HD & RLS

Yes, I can see that your plate is full. Either problem is and can be devastating by itself.

I know little about neurodegenerative diseases, but Huntington's Disease is quite dominant genetically. Since your brain cells, the neurons, are under attack by the protein huntingtin, I wonder whether low iron levels or dopamine levels accelerate or slow down the clumping process of intracellular proteins in the neurons?

Have you and others in your family had their ferritin level checked? If so, make sure you get a specific level, such as 86 microgams per milliliter. The normal range starts at 20 but anything lower than 50 can actually cause RLS symptoms.

The other is pain. Do you have pain that lessens when the extremities are moved? Do you have other types of pains such as typical neuralgic pain? What type of paresthesia do you suffer from?

Well, among our active members, as far as I know, we do not have somebody with this genetic problem except you. So...

It could be important for you and others in the same boat if you became a participant in our research project that places an emphasis of other afflictions or disorders related or seemingly unrelated ro RLS or RLS/PLMD.

This is the questionnaire becat mentions. I hope that you consider completing the form. The work is planned to be presented at the National Meeting of the RLS Foundation this Fall and hopefully will attract attention and expands the horizon of medical care takers and givers both.