Guest guest Posted March 20, 2007 Report Share Posted March 20, 2007 Trudy, It has been emphasized many times that the aim of LDN is to slow or stop progression and that any improvements are a bonus that not everybody is lucky enough to get. margiejean1954 wrote: >I'd like to get feedback from anyone in this group who is taking LDN >and has either secondary-progressive or chronic-progressive MS. I >have secondary-progressive and have been on LDN for almost a month. >I'm not sure I have seen any benefits yet. I don't know if the >improvements are so small that I can't notice them or if I'm not >giving LDN enough time yet. > >Thanks! > >Trudy in Wisconsin > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2007 Report Share Posted March 20, 2007 Trudy, In a progressive MS, isn't 'no change' an improvement in itself? Stopping progression is the 'purpose' of LDN. However, IF you will get symptom improvements, less that a month is often too soon to tell. At less than a month, the only improvement that I (Relapsing- Remitting MS) had noticed was a reduction in fatigue...and that kept going back and forth. Now at over nine months, there have been more improvements and I still hope my body will continue to heal. > I > have secondary-progressive and have been on LDN for almost a month. > I'm not sure I have seen any benefits yet...or if I'm not > giving LDN enough time yet. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2007 Report Share Posted March 20, 2007 Hi, Like you I have MS. I was diagnosed in 1989 with RRMS and and now it is being called SPMS. Tomorrow it will be only 2 weeks since I started taking LDN. I was feelin really good for the first week, much more energy less fatigue I also felt less stiffness. These last few days I'd say I feel like I did before taking it but not worse. We are told to wait at least 6 months before making any serious assessment. I guess we just have to keep an account of how we feel and be patient - easy to say hunh! But I would also like to hear the experiences of those in similar circumstances who have been on it longer. >From: " margiejean1954 " <margiejean1954@...> >Reply-low dose naltrexone >low dose naltrexone >Subject: [low dose naltrexone] Need Feedback >Date: Tue, 20 Mar 2007 13:39:16 -0000 > >I'd like to get feedback from anyone in this group who is taking LDN >and has either secondary-progressive or chronic-progressive MS. I >have secondary-progressive and have been on LDN for almost a month. >I'm not sure I have seen any benefits yet. I don't know if the >improvements are so small that I can't notice them or if I'm not >giving LDN enough time yet. > >Thanks! > >Trudy in Wisconsin > _________________________________________________________________ Fini les pigeons voyageurs: rejoignez enfin l'âge moderne de la communication! http://www.communicationevolved.com/fr-ch/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2007 Report Share Posted March 20, 2007 Hi Trudy, Can you tell us how much you are taking, where you get your LDN from and what filler they are using? I agree it takes a while for some, but it is good to ask and check in with everyone just to make sure you are getting the best possible success with this drug. Make sure to keep a daily or weekly lot in order to remember what changes (however subtle they may be). My best Aletha [low dose naltrexone] Need Feedback I'd like to get feedback from anyone in this group who is taking LDNand has either secondary-progressive or chronic-progressive MS. Ihave secondary-progressive and have been on LDN for almost a month. I'm not sure I have seen any benefits yet. I don't know if theimprovements are so small that I can't notice them or if I'm notgiving LDN enough time yet. Thanks!Trudy in Wisconsin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2007 Report Share Posted March 20, 2007 Hi Trudy, LDN is not suppose to give you symptomatic relief, it is just suppose to stop the progression of the disease. Some people are lucky and see symptomatic improvements. I have been on LDN for almost 4 years and according to my MRI ' S there is no progression in my disease. That is good news to me. Marie [low dose naltrexone] Need Feedback I'd like to get feedback from anyone in this group who is taking LDNand has either secondary-progressive or chronic-progressive MS. Ihave secondary-progressive and have been on LDN for almost a month. I'm not sure I have seen any benefits yet. I don't know if theimprovements are so small that I can't notice them or if I'm notgiving LDN enough time yet. Thanks!Trudy in Wisconsin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2007 Report Share Posted March 21, 2007 I am now nearing the end of six months on LDN. I was RRMS, but have been considerd secondary for several years now. I worked my way up slowly...starting at 1.5 mg. I was having many MS problems and was desperate when I started on the LDN. I have problems with almost all medications, and therefore do not take any unless it is absolutely necessary. I also am anti-drugs anyway, so I did alot of research before deciding to try LDN. I was determined to give it a 6 month trial, and it was necessary. I could have given up several times. I was worse at first and actually had bouts of vomiting and couldn't figure out if it was the LDN or a combination of the LDN and my supplements. But, I made it past all that. The first sign that the LDN was working was that I started to sleep better and dream again. Then my severe fatigue began to improve. Then leg spasms decreased and my pain decreased. By December I was able to stand and walk more. I was able to go Christmas shopping and walk like I had not been able to do in many years. About 3 weeks ago, I went to a large indoor show and was able to walk around all day. I was worn out by the end. But I have not been able to do this since I was diagnosed 17 years ago. I had gone to large shows in a wheelchair. Six months ago I could stand and/or walk for a maximum of approximately 20 minutes, and that was pushing it. My cane has been in my car trunk since December. Two weeks ago I had 3 MRIs done and I went back to my neurologist last week. My brain MRI was the same as the previous one. I have about 30 lesions....all inactive. My spine showed the same lesions....one appeared improved. So, I do believe that LDN needs a six month trial period. I did not have any expectations that I would have the improvements that I have experienced. I only expected that the LDN might keep me from progressing. And I realize that they may not last. But I am hopeful that they will. I do have one problem that has occurred in just the last few weeks. If anyone has had this happen to them, would you please let me know. Even though my fatigure is unbelievably improved, if I take a break and and recline to watch TV or read etc., I can fall asleep....instantly. I now sleep so well that it is to the extreme. I dream full feature movies. I am hoping that this is just another phase of adjusting to the LDN. I am amazed by my improvement on LDN. my best to all, nancy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2007 Report Share Posted March 21, 2007 > I do have one problem that has occurred in just the last few weeks. If anyone has had this happen to them, would you please let me know. Even though my fatigure is unbelievably improved, if I take a break and and recline to watch TV or read etc., I can fall asleep....instantly. I now sleep so well that it is to the extreme. > > my best to all, nancy > ============= I too find this happens to me since I started LDN 3 1/2 years ago. I used to suffer extreme insomnia but the LDN fully corrected that problem. I do hit a very deep sleep alot now. /Bren Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2007 Report Share Posted March 21, 2007 Hi , Is it possible, with the increase in physical activity made possible by LDN, that your body hasn't adjusted yet? Sounds as though you've been taking full advantage of improved mobility, but I wonder if you geared up a bit too quickly - perhaps too much too soon for the body to play catch up? Regards, Cris > > I am now nearing the end of six months on LDN. I was RRMS, but have been considerd secondary for several years now. > I worked my way up slowly...starting at 1.5 mg. I was having many MS problems and was desperate when I started on the LDN. I have problems with almost all medications, and therefore do not take any unless it is absolutely necessary. I also am anti-drugs anyway, so I did alot of research before deciding to try LDN. I was determined to give it a 6 month trial, and it was necessary. I could have given up several times. I was worse at first and actually had bouts of vomiting and couldn't figure out if it was the LDN or a combination of the LDN and my supplements. But, I made it past all that. > The first sign that the LDN was working was that I started to sleep better and dream again. Then my severe fatigue began to improve. Then leg spasms decreased and my pain decreased. > By December I was able to stand and walk more. I was able to go Christmas shopping and walk like I had not been able to do in many years. About 3 weeks ago, I went to a large indoor show and was able to walk around all day. I was worn out by the end. But I have not been able to do this since I was diagnosed 17 years ago. I had gone to large shows in a wheelchair. > Six months ago I could stand and/or walk for a maximum of approximately 20 minutes, and that was pushing it. My cane has been in my car trunk since December. > Two weeks ago I had 3 MRIs done and I went back to my neurologist last week. My brain MRI was the same as the previous one. I have about 30 lesions....all inactive. My spine showed the same lesions....one appeared improved. > So, I do believe that LDN needs a six month trial period. I did not have any expectations that I would have the improvements that I have experienced. I only expected that the LDN might keep me from progressing. And I realize that they may not last. But I am hopeful that they will. > I do have one problem that has occurred in just the last few weeks. If anyone has had this happen to them, would you please let me know. Even though my fatigure is unbelievably improved, if I take a break and and recline to watch TV or read etc., I can fall asleep....instantly. I now sleep so well that it is to the extreme. I dream full feature movies. I am hoping that this is just another phase of adjusting to the LDN. I am amazed by my improvement on LDN. > > my best to all, nancy > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2007 Report Share Posted March 24, 2007 Hi Cris, This has been gradual....over the last weeks since I went to 4.5mg.Your response is exactly what I am hoping... that my body is still adjusting to the LDN?? I have gone from extreme fatigue and not sleeping well or dreaming... to sleeping too well. Maybe because I can keep going for longer periods of time, I am getting sleepy even though my body doesn't feel as tired? Anyway, my improvements far outweigh this one problem. I can deal with it. I just thought that it was an odd consequence, and wondered if anyone else may have gone through a period like this. I am feeling very hopeful on LDN at this point. Are you the Cris that just wrote the paper on the connection between the fatty acids etc. and psoriasis problems? I have saved it to re- read. You asked if anyone noticed any typos etc. There are some...I saved it because I have based my MS on supplements...the mainstay being essential fatty acids for 16 years...I am going to have a serum fatty acid analysis done....a doctor at s Hopkins told me that they are the reason that I have beat the odds with my MS. The only other thing I have ever tried is the LDN. If you want, write me offline... thanks for the feedback, nancy > > > > I am now nearing the end of six months on LDN. I was RRMS, but have > been considerd secondary for several years now. > > I worked my way up slowly...starting at 1.5 mg. I was having many > MS problems and was desperate when I started on the LDN. I have > problems with almost all medications, and therefore do not take any > unless it is absolutely necessary. I also am anti-drugs anyway, so I > did alot of research before deciding to try LDN. I was determined to > give it a 6 month trial, and it was necessary. I could have given up > several times. I was worse at first and actually had bouts of > vomiting and couldn't figure out if it was the LDN or a combination > of the LDN and my supplements. But, I made it past all that. > > The first sign that the LDN was working was that I started to sleep > better and dream again. Then my severe fatigue began to improve. Then > leg spasms decreased and my pain decreased. > > By December I was able to stand and walk more. I was able to go > Christmas shopping and walk like I had not been able to do in many > years. About 3 weeks ago, I went to a large indoor show and was able > to walk around all day. I was worn out by the end. But I have not > been able to do this since I was diagnosed 17 years ago. I had gone > to large shows in a wheelchair. > > Six months ago I could stand and/or walk for a maximum of > approximately 20 minutes, and that was pushing it. My cane has been > in my car trunk since December. > > Two weeks ago I had 3 MRIs done and I went back to my neurologist > last week. My brain MRI was the same as the previous one. I have > about 30 lesions....all inactive. My spine showed the same > lesions....one appeared improved. > > So, I do believe that LDN needs a six month trial period. I did not > have any expectations that I would have the improvements that I have > experienced. I only expected that the LDN might keep me from > progressing. And I realize that they may not last. But I am hopeful > that they will. > > I do have one problem that has occurred in just the last few weeks. > If anyone has had this happen to them, would you please let me know. > Even though my fatigure is unbelievably improved, if I take a break > and and recline to watch TV or read etc., I can fall > asleep....instantly. I now sleep so well that it is to the extreme. I > dream full feature movies. I am hoping that this is just another > phase of adjusting to the LDN. I am amazed by my improvement on LDN. > > > > my best to all, nancy > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2007 Report Share Posted March 24, 2007 Hi , did you post your list of oils/supplements that you are taking? I might have missed it, but if not, could you share what has worked for you. Fantastic that you have beat the odds! Thanks! From: nancytorney [mailto: ninatorney@...]low dose naltrexone Date: Sat, 24 Mar 2007 00:47:43 -0000Subject: [low dose naltrexone] Re: Need FeedbackHi Cris,This has been gradual....over the last weeks since I went to 4.5mg.Your response is exactly what I am hoping... that my body is still adjusting to the LDN?? I have gone from extreme fatigue and not sleeping well or dreaming... to sleeping too well. Maybe because I can keep going for longer periods of time, I am getting sleepy even though my body doesn't feel as tired?Anyway, my improvements far outweigh this one problem. I can deal with it. I just thought that it was an odd consequence, and wondered if anyone else may have gone through a period like this. I am feeling very hopeful on LDN at this point. Are you the Cris that just wrote the paper on the connection between the fatty acids etc. and psoriasis problems? I have saved it to re-read. You asked if anyone noticed any typos etc. There are some...I saved it because I have based my MS on supplements...the mainstay being essential fatty acids for 16 years...I am going to have a serum fatty acid analysis done....a doctor at s Hopkins told me that they are the reason that I have beat the odds with my MS. The only other thing I have ever tried is the LDN. If you want, write me offline...thanks for the feedback, nancy> >> > I am now nearing the end of six months on LDN. I was RRMS, but have > been considerd secondary for several years now. > > I worked my way up slowly...starting at 1.5 mg. I was having many > MS problems and was desperate when I started on the LDN. I have > problems with almost all medications, and therefore do not take any > unless it is absolutely necessary. I also am anti-drugs anyway, so I > did alot of research before deciding to try LDN. I was determined to > give it a 6 month trial, and it was necessary. I could have given up > several times. I was worse at first and actually had bouts of > vomiting and couldn't figure out if it was the LDN or a combination > of the LDN and my supplements. But, I made it past all that.> > The first sign that the LDN was working was that I started to sleep > better and dream again. Then my severe fatigue began to improve. Then > leg spasms decreased and my pain decreased.> > By December I was able to stand and walk more. I was able to go > Christmas shopping and walk like I had not been able to do in many > years. About 3 weeks ago, I went to a large indoor show and was able > to walk around all day. I was worn out by the end. But I have not > been able to do this since I was diagnosed 17 years ago. I had gone > to large shows in a wheelchair.> > Six months ago I could stand and/or walk for a maximum of > approximately 20 minutes, and that was pushing it. My cane has been > in my car trunk since December.> > Two weeks ago I had 3 MRIs done and I went back to my neurologist > last week. My brain MRI was the same as the previous one. I have > about 30 lesions....all inactive. My spine showed the same > lesions....one appeared improved. > > So, I do believe that LDN needs a six month trial period. I did not > have any expectations that I would have the improvements that I have > experienced. I only expected that the LDN might keep me from > progressing. And I realize that they may not last. But I am hopeful > that they will. > > I do have one problem that has occurred in just the last few weeks. > If anyone has had this happen to them, would you please let me know. > Even though my fatigure is unbelievably improved, if I take a break > and and recline to watch TV or read etc., I can fall > asleep....instantly. I now sleep so well that it is to the extreme. I > dream full feature movies. I am hoping that this is just another > phase of adjusting to the LDN. I am amazed by my improvement on LDN.> > > > my best to all, nancy> >>Join Excite! - http://www.excite.comThe most personalized portal on the Web! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2007 Report Share Posted March 24, 2007 Thank you for your inspiring ldn story. >From: " Torney " <ninatorney@...> >Reply-low dose naltrexone ><low dose naltrexone > >Subject: [low dose naltrexone] Re: Need Feedback >Date: Wed, 21 Mar 2007 14:19:05 -0400 > >I am now nearing the end of six months on LDN. I was RRMS, but have been >considerd secondary for several years now. >I worked my way up slowly...starting at 1.5 mg. I was having many MS >problems and was desperate when I started on the LDN. I have problems with >almost all medications, and therefore do not take any unless it is >absolutely necessary. I also am anti-drugs anyway, so I did alot of >research before deciding to try LDN. I was determined to give it a 6 month >trial, and it was necessary. I could have given up several times. I was >worse at first and actually had bouts of vomiting and couldn't figure out >if it was the LDN or a combination of the LDN and my supplements. But, I >made it past all that. >The first sign that the LDN was working was that I started to sleep better >and dream again. Then my severe fatigue began to improve. Then leg spasms >decreased and my pain decreased. >By December I was able to stand and walk more. I was able to go Christmas >shopping and walk like I had not been able to do in many years. About 3 >weeks ago, I went to a large indoor show and was able to walk around all >day. I was worn out by the end. But I have not been able to do this since I >was diagnosed 17 years ago. I had gone to large shows in a wheelchair. >Six months ago I could stand and/or walk for a maximum of approximately 20 >minutes, and that was pushing it. My cane has been in my car trunk since >December. >Two weeks ago I had 3 MRIs done and I went back to my neurologist last >week. My brain MRI was the same as the previous one. I have about 30 >lesions....all inactive. My spine showed the same lesions....one appeared >improved. >So, I do believe that LDN needs a six month trial period. I did not have >any expectations that I would have the improvements that I have >experienced. I only expected that the LDN might keep me from progressing. >And I realize that they may not last. But I am hopeful that they will. >I do have one problem that has occurred in just the last few weeks. If >anyone has had this happen to them, would you please let me know. Even >though my fatigure is unbelievably improved, if I take a break and and >recline to watch TV or read etc., I can fall asleep....instantly. I now >sleep so well that it is to the extreme. I dream full feature movies. I am >hoping that this is just another phase of adjusting to the LDN. I am amazed >by my improvement on LDN. > >my best to all, nancy > _________________________________________________________________ Ne faites pas souffrir des pauvres volatiles sans défense afin de communiquer! http://www.communicationevolved.com/fr-ch/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2007 Report Share Posted March 24, 2007 Trudy in Wisconsin, If I were you I would stick with the LDN and think openly if there might be some things that are bothering you that might be happening the positive effects of LDC. God knows it's cheap enough and there are no side effects.Think it over and listen to every one esle's opinion. Good Luck. Ann F. annf02@...AOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2007 Report Share Posted April 20, 2007 Octavia, Are you writing to me in regard to supplements that I take or are you writing to someone for a general list? My emails have really been a mess for the month of April....multiples of emails and even arriving in odd order. I lost alot of them. If you were asking me, let me know and I will write back to you. nancy > > > > > > I am now nearing the end of six months on LDN. I was RRMS, but > have > > been considerd secondary for several years now. > > > I worked my way up slowly...starting at 1.5 mg. I was having > many > > MS problems and was desperate when I started on the LDN. I have > > problems with almost all medications, and therefore do not take > any > > unless it is absolutely necessary. I also am anti-drugs anyway, so > I > > did alot of research before deciding to try LDN. I was determined > to > > give it a 6 month trial, and it was necessary. I could have given > up > > several times. I was worse at first and actually had bouts of > > vomiting and couldn't figure out if it was the LDN or a > combination > > of the LDN and my supplements. But, I made it past all that. > > > The first sign that the LDN was working was that I started to > sleep > > better and dream again. Then my severe fatigue began to improve. > Then > > leg spasms decreased and my pain decreased. > > > By December I was able to stand and walk more. I was able to go > > Christmas shopping and walk like I had not been able to do in many > > years. About 3 weeks ago, I went to a large indoor show and was > able > > to walk around all day. I was worn out by the end. But I have not > > been able to do this since I was diagnosed 17 years ago. I had > gone > > to large shows in a wheelchair. > > > Six months ago I could stand and/or walk for a maximum of > > approximately 20 minutes, and that was pushing it. My cane has > been > > in my car trunk since December. > > > Two weeks ago I had 3 MRIs done and I went back to my > neurologist > > last week. My brain MRI was the same as the previous one. I have > > about 30 lesions....all inactive. My spine showed the same > > lesions....one appeared improved. > > > So, I do believe that LDN needs a six month trial period. I did > not > > have any expectations that I would have the improvements that I > have > > experienced. I only expected that the LDN might keep me from > > progressing. And I realize that they may not last. But I am > hopeful > > that they will. > > > I do have one problem that has occurred in just the last few > weeks. > > If anyone has had this happen to them, would you please let me > know. > > Even though my fatigure is unbelievably improved, if I take a > break > > and and recline to watch TV or read etc., I can fall > > asleep....instantly. I now sleep so well that it is to the > extreme. I > > dream full feature movies. I am hoping that this is just another > > phase of adjusting to the LDN. I am amazed by my improvement on > LDN. > > > > > > my best to all, nancy > > > > > > > > > > > > --------------------------------- > Ahhh...imagining that irresistible " new car " smell? > Check outnew cars at Autos. > Quote Link to comment Share on other sites More sharing options...
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