Re: RLS-Trauma induced

[Guest guest]

Yo, hello,

I am very much interested in the trauma induced letter from a 38 YO who was

injured. I have worked specifically on Trauma induced RLS cases since I was

injured on 5/2/96. I was just successful in obtaining Social Security after a

2 year battle. I was injured at work and currently await a third-party and

worker's comp. settlements. I have severe RLS/PLMS and always seek out those

who feel they have trauma induced RLS/PLMS. To Ultimar88@..., I will

contact you directly to see if I can personally contact " , " who wrote

the letter about his trauma induced RLS. I will email my Social Security

Determination Letter to him if it is requested.

I always like to share information with any RLS sufferer, particularly those

who got this hideous disorder via a trauma to the spine or brain. I also have

a letter from a very important Doctor who is the Director of a Sleep Center

here in Philly and well published in the RLS/PLMS field, which states the

cause of my RLS to be trauma induced. Please get back in touch with me.

Thanks.

Ed-Cyberphlly

[Guest guest]

Yo, Lee,

I have found that the trauma induced RLS is worse than genetic, AS A WHOLE. I

found some relief with Restoril, Xanax and Percocete. Of course, not at the

same time. Neurontin is a good " add-on " drug. I would suggest 100mg three

times per day of the Neurontin and would work it up to 900mg per day and go

even higher incrementally until relief is found. I would also take 30mg of

Restoril about 30 minutes before bed, along with the last dose of Neurontin.

Xanax works good also, to get someone to sleep. You can start out with .25mg

at bedtime and work it up to 1 mg. THIS IS INFORMATION ONLY AND A DOCTOR'S

OPINION MUST BE OBTAINED BEFORE ANY MEDICATIONS ARE TAKEN.

lee, I have found that Tamazepan(SP?) family has been the most successful

for me, although, everything seems to stop working after a while. GOOD LUCK TO

YOUR MOTHER, MAY SHE FIND A WAY TO TAME HER RLS!

Ed-Cyberphilly

[Guest guest]

Yo ,

Never heard of Issac's Syndrome/Disorder. Have you been diagnosed with RLS?

Also, PLMS - Periodoc Limb Movement while Sleeping is associated with RLS and

someone must observe you while sleeping to see if you have PLMS. 80% of all

RLS patients have PLMS. Stay in touch. Any bulging discs? Does this happen

more at night than during the day? Do you have to shake limbs to get relief?

Also, I know what you mean by crawling sensations under the skin and actual

movement of muscle, I get that too. Can you explain this Issac's thing for me?

Thanks

Ed-Cyberphilly

[Guest guest]

Yo Ninette,

I hope my letter to sheds light on what I mean by " worse. " Another

factor I have experienced is that in sixteen documented cases, trauma induced

RLS is experienced EVERY night, save for a night or two per month of less

severe feelings.

No Ninette, you certainly didn't offend me as much as I must have offended you

with my observation. If I did, it was not my intention. Believe me, RLS is

hideous, no matter who has it. Next time I'll use a better word than " worse. "

Maybe unrelenting.

Ed-Cyberphilly

[Guest guest]

Yo Ed,how did you find that the trauma induced is worse that the genetic?

I have the genetic kind, and I am lucky to have meds that help me some, at this

moment

but my rls is very bad, according to my neuro the worst he has ever seen.They

will

make a videotape to educate the dutch dr.s.Go figure.

I know it is not a contest who has the worst rls, and maybe I am an exeption,but

I

felt

the need to add this, Marleen, alive and kicking,Holland

EJude958@... wrote:

> From: EJude958@...

>

> Yo, Lee,

>

> I have found that the trauma induced RLS is worse than genetic, AS A WHOLE. I

> found some relief with Restoril, Xanax and Percocete. Of course, not at the

> same time. Neurontin is a good " add-on " drug. I would suggest 100mg three

> times per day of the Neurontin and would work it up to 900mg per day and go

> even higher incrementally until relief is found. I would also take 30mg of

> Restoril about 30 minutes before bed, along with the last dose of Neurontin.

> Xanax works good also, to get someone to sleep. You can start out with .25mg

> at bedtime and work it up to 1 mg. THIS IS INFORMATION ONLY AND A DOCTOR'S

> OPINION MUST BE OBTAINED BEFORE ANY MEDICATIONS ARE TAKEN.

>

> lee, I have found that Tamazepan(SP?) family has been the most successful

> for me, although, everything seems to stop working after a while. GOOD LUCK TO

> YOUR MOTHER, MAY SHE FIND A WAY TO TAME HER RLS!

>

> Ed-Cyberphilly

>

> ------------------------------------------------------------------------

>

[Guest guest]

Yo Suzanne,

Sorry to get testy but your posts to me tend to be negative. Did I do anything

in the past to get you pissed at me? As for the sixteen documented cases of

trauma induced RLS, I think it is enough to raise an eyebrow or two. I just

don't throw out information for the hell of it. Several RLS/Sleep disorder

doctors I have spoken to agree with my hypothesis, which is only just that, a

hypothesis. This " angle " is still being researched and hopefully I will be

able to prove, even to you, that there may be some merit to this hypothesis.

Until then, see ya.

Ed-Cyberphilly

[Guest guest]

Yo Suzanne,

Sorry to get testy but your posts to me tend to be negative. Did I do anything

in the past to get you pissed at me? As for the sixteen documented cases of

trauma induced RLS, I think it is enough to raise an eyebrow or two. I just

don't throw out information for the hell of it. Several RLS/Sleep disorder

doctors I have spoken to agree with my hypothesis, which is only just that, a

hypothesis. This " angle " is still being researched and hopefully I will be

able to prove, even to you, that there may be some merit to this hypothesis.

Until then, see ya.

Ed-Cyberphilly

[Guest guest]

Yo Suzanne,

Sorry to get testy but your posts to me tend to be negative. Did I do anything

in the past to get you pissed at me? As for the sixteen documented cases of

trauma induced RLS, I think it is enough to raise an eyebrow or two. I just

don't throw out information for the hell of it. Several RLS/Sleep disorder

doctors I have spoken to agree with my hypothesis, which is only just that, a

hypothesis. This " angle " is still being researched and hopefully I will be

able to prove, even to you, that there may be some merit to this hypothesis.

Until then, see ya.

Ed-Cyberphilly

[Guest guest]

Ed,

I have all the things you mentioned about trauma induced rls, and to my

knowledge, my rls is not caused by trauma. My father had PLMD, so I

believe it's genetic in my case. I don't think 16 cases is enough

documentation on which to base a conclusion.

ne, 59, Lawrenceville, NJ

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[Guest guest]

Ed,

I have all the things you mentioned about trauma induced rls, and to my

knowledge, my rls is not caused by trauma. My father had PLMD, so I

believe it's genetic in my case. I don't think 16 cases is enough

documentation on which to base a conclusion.

ne, 59, Lawrenceville, NJ

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[Guest guest]

Ed,

I have all the things you mentioned about trauma induced rls, and to my

knowledge, my rls is not caused by trauma. My father had PLMD, so I

believe it's genetic in my case. I don't think 16 cases is enough

documentation on which to base a conclusion.

ne, 59, Lawrenceville, NJ

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[Guest guest]

Yo Ed,

I have to agree with the " girls " on this one.

I just don't think 16 cases is enough to work with, especially to say

that this makes them

more " relentless " than genetic cases. Again,

I don't think any of us are trying to upset you,

we just don't agree and are questioning why

you think this is so. OK ------ OK

Peace, ??

Ninette

[Guest guest]

Yo Ed,

I have to agree with the " girls " on this one.

I just don't think 16 cases is enough to work with, especially to say

that this makes them

more " relentless " than genetic cases. Again,

I don't think any of us are trying to upset you,

we just don't agree and are questioning why

you think this is so. OK ------ OK

Peace, ??

Ninette

[Guest guest]

Yo Ed,

I have to agree with the " girls " on this one.

I just don't think 16 cases is enough to work with, especially to say

that this makes them

more " relentless " than genetic cases. Again,

I don't think any of us are trying to upset you,

we just don't agree and are questioning why

you think this is so. OK ------ OK

Peace, ??

Ninette

[Guest guest]

Genetic vs. trauma-induced RLS:

I have only read the last couple of messages re this discussion.

First of all, I don't know how a determination is made that one's RLS

is " genetic " ... I mean have they identified a specific gene for RLS?

Is RLS assumed to be genetic if it develops in childhood or in the

absence of trauma???

I had RLS as a child. My father had it but his was quite mild

compared to what mine has developed into ... in terms of symptom

intensity. I know of no one else in my family who has had or has

RLS. Does the fact that my father had RLS definitely mean that I

inherited mine from him? I don't know how that can be proven if a

gene has not been identified or unless there has been a demographic

study with a large enough patient population to produce statistically

and clinically significant results.

I work as a scientific reviewer for FDA. I review engineering,

material biocompatibility, and clinical trials for new medical

devices, e.g., implantable defibrillators, etc. I know enough to know

that a sample size of 16 (patients) is too small a population on which

to base a conclusion re etiology of RLS.

This does not mean that trauma-induced RLS is not worse (in terms of

symptom intensity) ... it may be. It just means that more data are

needed.

Since I personally have not experienced any significant trauma that I

think could be related to my RLS, if trauma-induced RLS is worse that

what I have, all I can say is HOW DO THESE FOLKS STAND IT??? I went

through hell before I found a neurologist who is an expert in RLS.

Now with a combination of Sinimet and Mirapex, I am able to cope. I

do still have a problem but I can live with it for now. My main

concerns are (1) that Sinimet is known to lose its effectiveness over

time (although I understand that you can stay off of it and go back

and it usually will work again) and (2) the increase in daytime RLS

(which I understand is also related to Sinimet). I've tried to switch

over completely to Mirapex but I can't, however, I have been able to

decrease my Sinimet dosage. Have any of you heard of a drug called

ReQuip? something like that?

Sorry for such a long message.

janegf@...

---Ninette wrote:

>

> From: ninettecampbell@... (Ninette )

>

> Yo Ed,

> I have to agree with the " girls " on this one.

> I just don't think 16 cases is enough to work with, especially to say

> that this makes them

> more " relentless " than genetic cases. Again,

> I don't think any of us are trying to upset you,

> we just don't agree and are questioning why

> you think this is so. OK ------ OK

> Peace, ??

> Ninette

>

>

>

------------------------------------------------------------------------

>

[Guest guest]

That I can remember, I have not had any trauma that would cause RLS, my

Mom has it really bad and as most of you know, so does my daughter. I

had the achey knees as a child and could never sit in one place for long.

As far as trauma induced, the only correlation is that my Mom noticed

her RLS got MUCH worse in her left leg after she had hip surgery. Before

that time, she said her left leg wasn't too bad, normally it was her

right leg that bothered her.

My daughter has not had any trauma that might trigger RLS/PLMD. My Mom

will rock her whole body when in the throws of an RLS attack. The

mirapex has helped alot, but she still rocks on occasion.

I don't know, perhaps trauma somehow makes RLS worse in people, or

perhaps we are prone to it, and the trauma brings it to the surface.

Just thinking out loud, folks.

Hope we find the answer soon.

Debbie

, Ca.

41 and holding

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