RLS anyone?

[Ellen S]

There are several discussions here that have turned into information sharing about RLS (Restless Leg Syndrome). I was going to add to an existing conversation, but decided to begin this thread instead...

RLS and certain kinds of dystonia seem often to be confused. When I did a search on this board for RLS, there were pages of links that showed up.

**I'm wondering how many have ever gotten a diagnosis of RLS?
**How many feel that they do have RLS? Perhaps this is in addition to Dystonia, or instead of...
**Does anyone have any feelings whether they think that there is any kind of connection between RLS and certain dystonias?

I have written before of a dear friend with a Dx of RLS. His sister is showing symptoms, as is his son. His father is disabled at this point. The RLS continued to progress until now when his father's legs are in full spasm all the time and he is in a wheelchair. Our friend takes RLS medicines, but he is younger than I and is already outdosing the general instructions for the medicines (as per doctor's orders) just so he can have a life. His legs seem to be doing some sort of myoclonic sort of jerking that goes on during the day and at its worst at night. There is no prodrome sensation involved, just the jerks. If anyone has any experience or links they would be willing to share, it would really be appreciated.

Additionally, you may know that WEGO Health is doing a focus group on RLS. If you know anyone that suffers, here is the link to share with them:

http://www.surveymonkey.com/s.aspx?sm=7m1VO0m9KupAqTKebJV2XA_3d_3d

I sure wish there was more research into both of these complicated movement disorders. I wish we understood how they are the same, and how they are different.

[ramona]

Yes, I have been diagnosed with RLS and it eventually began to fall into the "severe" category. I finally broke down and started taking Mirapex for it and that was one of the best decisions I ever made - I finally began to get some sleep. I am also on Folitab 500, a presc iron supplement. I found out recently when I ran out of that medication that it also has a HUGE effect on the RLS and dystonia, although I was put on it for anemia. That was a surprise to me.

I was diagnosed with RLS before I was diagnosed with dystonia, but I also find it interesting that the medications that work on my dystonia are Parkinson's meds, which Mirapex is, also. I take 800 mg of Stalevo each day, in addition to having had DBS.

Blessings
Ramona

[Rosemary]

I think I have read that low iron can cause RLS

[beka]

Hi Ellen -

How are you today ?
** Wondering how many have ever gotten a diagnosis of RLS?
I have never gotten a formal diagnosis of RLS but sincerely think that it does exist for me..Symptoms include the typical crawling sensations that one gets at nite, but then again it also is more like charlie horse cramping in both legs at nite..? Other time times it is more jerk-like sensations - similar to myoclonic twitches.

**How many feel that they do have RLS? Perhaps this is in addition to Dystonia, or instead of...
Some form of RLS YES.. along with dystonia.. which I would have thought would be taken care of by DBS but not so...symptoms come and go.. abate at times..not sure if food related.. exercise related or ??

**Does anyone have any feelings whether they think that there is any kind of connection between RLS and certain dystonias?
I am beginning to think that all the movement disorders are related to one another all along the line of neurological disorder spectrums..One has to wonder- if without ion channels, we would cease to move, think, or breathe—hence their involvement in many diseases and their attractiveness as drug targets. Indeed, recent activities in the development of drugs that target ion channels have increased our understanding of neuro disorders. The one thing is that Parkinsons does not fit into this category of ion-channelopathies ( Search this word within Wego Health - we have a long thread about this TOPIC ) because PD involves loss of dopamine, the neurotransmitter.

Anyone else ??

beka

[Trudy]

**I'm wondering how many have ever gotten a diagnosis of RLS?
I was diagnosed with RLS at the same time I was diagnosed with narcolepsy (2000 or so). When I was younger and on through my teens my legs would literally 'bounce' on the bed when I was trying to sleep. It was not uncommon to have my parents rub my legs in an effort to ease the pain and try to get me to relax. I've experienced foot, calf, and thigh cramps for most of my life. The most painful cramps by far though have been the one that starts at the outter ankle bone and up the side of my shin. I started getting this type the last few years.

I, like many others on my Dad's side of the family, while sitting in a chair would unconsciously bounce or wiggle my legs. I had never heard of RLS until my first sleep specialist mentioned it. At that time he prescribed Mirapex. That helped for a short time and then the symptoms started up again so he increased the dosage. That ended up being very detrimental for me, resulting in changing to a new sleep specialist. My new doctor took me off the Mirapex and started me on Clonazepam. The dose is pretty low and I can take it at bedtime as needed. Since starting the Clonazepam a few years ago my afternoon 'leg bouncing/creepy feeling' subsided a little. There have been a few times, especially recently, where I have taken the Clonazepam nightly because of the pain, with the hint of possible cramping during my sleep.

**Does anyone have any feelings whether they think that there is any kind of connection between RLS and certain dystonias?
I'm not sure if RLS has a connection to a certain dystonia per se. I know that my RLS will effect my dystonia (cervical dx 2007) because it impedes my ability to get a full night of rest. It's that domino effect of cramping/pain interrupts my sleep causing me to be more tired the next day leading to more dystonia symptoms and then the cycle starts up again when I go to bed again. Obviously there are gradations to the cause and effect of this as well as other factors. Although the Clonazepam does knock me out, thus sleeping through the night, it is so difficult to get up and function the next day I sometimes hesitate to take it. I guess that is one of those trade offs to weigh, huh?

I'm curious to hear if others experience RLS -- thanks for the question.

Trudy

[Elaine]

I was dxed with RLS about 15 years ago. But was not treated for it.
I found myself so addicted to sleep meds that my life was at risk.
I quit cold turkey. And researched RLS.
Took the info to my GP and said I want Mirapex.

I take 1 mg to 1.5 mg per night. If I miss a dose I cannot sleep longer than an hour, if I can fall asleep at all.
I find RLS is worse during period time.
I also take a sleep med, Zoplicone. I am VERY careful with it, as I realize I could become addicted to it again.
I NEVER exceed the recommended dose.

I personally have never felt that it is related to my movement problem.

Elaine

[Canary3]

How are you Ellen? Have been Dx with DRD,Lft arm unable to use much without setting off dystonic reactions,but find @ times it will also jerk uncontrol. by itself. Don't know what I would do if both my legs did this too! Must be a connection up in those neurons biochemically.