Guest guest Posted February 6, 1999 Report Share Posted February 6, 1999 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 1999 Report Share Posted February 7, 1999 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 1999 Report Share Posted February 7, 1999 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 1999 Report Share Posted February 7, 1999 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 1999 Report Share Posted February 7, 1999 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 > > ------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 1999 Report Share Posted February 7, 1999 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 1999 Report Share Posted February 7, 1999 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 1999 Report Share Posted February 7, 1999 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 1999 Report Share Posted February 7, 1999 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 ___________________________________________________________________ You don't need to buy Internet access to use free Internet e-mail. Get completely free e-mail from Juno at http://www.juno.com/getjuno.html or call Juno at (800) 654-JUNO [654-5866] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 1999 Report Share Posted February 7, 1999 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 ___________________________________________________________________ You don't need to buy Internet access to use free Internet e-mail. Get completely free e-mail from Juno at http://www.juno.com/getjuno.html or call Juno at (800) 654-JUNO [654-5866] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 1999 Report Share Posted February 7, 1999 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 ___________________________________________________________________ You don't need to buy Internet access to use free Internet e-mail. Get completely free e-mail from Juno at http://www.juno.com/getjuno.html or call Juno at (800) 654-JUNO [654-5866] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 1999 Report Share Posted February 7, 1999 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 1999 Report Share Posted February 7, 1999 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 1999 Report Share Posted February 7, 1999 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 1999 Report Share Posted February 7, 1999 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 > > > ------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 1999 Report Share Posted February 8, 1999 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 ___________________________________________________________________ You don't need to buy Internet access to use free Internet e-mail. Get completely free e-mail from Juno at http://www.juno.com/getjuno.html or call Juno at (800) 654-JUNO [654-5866] Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.