Guest guest Posted March 8, 2004 Report Share Posted March 8, 2004 Welcome Lana, I am sorry that you have PLS, but am happy you have found this group, you will find you have a lot of friends here that truely know what you are going through. I also had a rough time in the beginning with a Nero more or less stating it was all in my head. Then I was diagnosed with having M.S. Now they are saying all my tests are inconclusive of M.S. and that I have PLS. I was totally lost until I met this group. I have never tried naltreone myself but others might have. Have a great day, and again welcome. Sandy ldn Hi- I'm new to the group and have been reading the messages for a week with great interest. I feel relieved, and even happy, that I have found others who know what I'm experiencing. PLS is so uncommon that I have felt very alone with this disease. Even the neurologist who made my diagnosis, said I'm only the 2nd patient he's seen with PLS. My symptoms began in my legs in 1996. The first neurologist I saw said my reflexes(my leg flew when tapped) were no more brisk than her own, and sent me to psychiatry. Psychiatry diagnosed me with an anxiety disorder and prescribed a med.---I WAS anxious, I was having trouble walking and it scared the heck out of me! I knew something wasn't right. Anyway, 5 years & 4 neurologists later, finally I had a diagnosis. I now have involvement of legs, trunk, arms, speech and laugh at very inappropriate times (?emotional lability). I think the worst of all of these is the speech problem. I don't think any of us wants to have false hope, but how many readers have tried low dose naltrexone? It seems to have helped people with MS who have tried it. Coincidence or not? Lana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2004 Report Share Posted March 9, 2004 Hi Lana, Welcome to the group. Keep watching a lot of folks are talking about that drug and I believe some lady on here is presently on that medication and said she is doing quite well on it. ldn Hi- I'm new to the group and have been reading the messages for a week with great interest. I feel relieved, and even happy, that I have found others who know what I'm experiencing. PLS is so uncommon that I have felt very alone with this disease. Even the neurologist who made my diagnosis, said I'm only the 2nd patient he's seen with PLS. My symptoms began in my legs in 1996. The first neurologist I saw said my reflexes(my leg flew when tapped) were no more brisk than her own, and sent me to psychiatry. Psychiatry diagnosed me with an anxiety disorder and prescribed a med.---I WAS anxious, I was having trouble walking and it scared the heck out of me! I knew something wasn't right. Anyway, 5 years & 4 neurologists later, finally I had a diagnosis. I now have involvement of legs, trunk, arms, speech and laugh at very inappropriate times (?emotional lability). I think the worst of all of these is the speech problem. I don't think any of us wants to have false hope, but how many readers have tried low dose naltrexone? It seems to have helped people with MS who have tried it. Coincidence or not? Lana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2004 Report Share Posted March 30, 2004 There hasn't been much discussion about the use of ldn lately....... I have taken ldn for 12 nights now, and have noticed some benefits. I almost hesitate to say anything, for fear that a soon as I say these words, I will go back to my previous state. I have noticed more coordination and strength in my left hand. It just works better. (I have never had a problem with my right hand.) My speech. The words are coming out with much less effort, clearer and less raspy. Although when I'm tired, or in the evening, it gets raspy again. My swallowing is better, and I'm not laughing inappropriately as much as before ldn. My startle reflex seems less too. There may be a mild improvement in my balance and walking. Maybe I'm just having a really good week, or maybe it's the ldn. If you can obtain it, I think it's worth a try. Sometimes even small improvements can seem like a miracle. For me, just the improvement in my speech is worth staying on it. I've been alternating between 4.5mg and 3mg, because I did experience some stiffness at just 4.5. Also some problems sleeping and weird dreams. Both these side effects seem to be getting better. It would be nice to know who has tried it, and what their experience has been?? I don't mind being contacted. Lana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2004 Report Share Posted March 31, 2004 Hi Lana, I immediately forward the LDN material to my father's physician and he did give him the prescription, he thought it was worth a try. I was unable to locate a pharmacy in the Los Angeles area that would provide it in 4.5 mg form. This lead me to contact the pharmacy in New York listed on the website. Kim from the pharmacy was able to accept the prescription via fax. We are expecting to receive it by end of week. We are really hoping that this will help my father with his symptoms and hopefully his progression. I understand it does have different results with everyone, but, we won't know unless we try. I will definetly keep you all posted once he has began taking it. Liz F. lpisansky wrote: There hasn't been much discussion about the use of ldn lately....... I have taken ldn for 12 nights now, and have noticed some benefits. I almost hesitate to say anything, for fear that a soon as I say these words, I will go back to my previous state. I have noticed more coordination and strength in my left hand. It just works better. (I have never had a problem with my right hand.) My speech. The words are coming out with much less effort, clearer and less raspy. Although when I'm tired, or in the evening, it gets raspy again. My swallowing is better, and I'm not laughing inappropriately as much as before ldn. My startle reflex seems less too. There may be a mild improvement in my balance and walking. Maybe I'm just having a really good week, or maybe it's the ldn. If you can obtain it, I think it's worth a try. Sometimes even small improvements can seem like a miracle. For me, just the improvement in my speech is worth staying on it. I've been alternating between 4.5mg and 3mg, because I did experience some stiffness at just 4.5. Also some problems sleeping and weird dreams. Both these side effects seem to be getting better. It would be nice to know who has tried it, and what their experience has been?? I don't mind being contacted. Lana --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2004 Report Share Posted April 20, 2004 According to BlueCross BlueShield there is a compound called Suboxone (buprenurphine hcl/naloxone hcl) in .5 mg to 8mg dosages. Does anyone know if this item will serve as LDN? Don 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.