Guest guest Posted July 13, 2004 Report Share Posted July 13, 2004 and all ldners, I have repeated this many times. Thanks for posting because when ever I have posted the fact that LDN was to stop progression only and anything else was a perk, it seems to be ignored. You are not a wet blanket, only a realist and I am glad I am not the only one trying to get this message thru. Kiki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2004 Report Share Posted July 13, 2004 I agree 100%. I know how desperately we MSers want to regain all that is lost, but I'm afraid that we can be setting ourselves up for too much disappointment. Expect a halt of progression and possibly some symptom improvement. Anything else is icing on the cake!! At least it offers hope! Marcie (PPMS) In a message dated 7/13/2004 7:49:25 AM Central Standard Time, jatrac1@... writes: I hate to be something of a wet blanket, but I keep seeing all of these posts from folks who are not "improving" while on LDN, and "waiting for LDN to kick in". I know many people do see improvements, but isn't the expectation from LDN actually an end to the progression of the disease? Recovering lost abilities is a great thing, and in some cases LDN seems to be helping people do so, but progression is the target here. People new to the site are going to start taking LDN and expecting miracles, and then will doubt the med is doing anything for them. Improved strength, balance, bladder control, seem to be pretty common responses, but just staying the same is also an LDN success. Are some of the success stories creating unrealistic expectations for people just starting their LDN journey? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2004 Report Share Posted July 13, 2004 Thanks Kiki. I am concerned that people may give up on LDN, forgetting, or not understanding, that the primary value of this medicine is to slow or stop the progression. Having done that it may be possible, over an extended period of time, to regain some abilities and to rebuild some strength. That's another issue altogether. But I hope people will not quit taking it because there aren't instant changes in their condition. ----- Original Message ----- From: noclue915@... low dose naltrexone Sent: Tuesday, July 13, 2004 7:06 AM Subject: Re: [low dose naltrexone] Improvements and all ldners, I have repeated this many times. Thanks for posting because when ever I have posted the fact that LDN was to stop progression only and anything else was a perk, it seems to be ignored. You are not a wet blanket, only a realist and I am glad I am not the only one trying to get this message thru. Kiki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2004 Report Share Posted July 13, 2004 Your quite right I started LDN eight months ago expecting nothing, hoping for anything. I would have been very disillusioned if I was under the impression that I could soon resume my old job again. As it is I am disappointed that my body quit repairing itself so soon after 'only' giving me back my bladder control, partial use of my left hand again,and taking away the L'Hermettes syndrome plus the intense pain associated with neurological damage. Am I being sarcastic? Yes! Am I glad I found LDN? I am ecstatic!Am I still progressing? Who knows? it is still to soon to know in my books as I may be going thru a very long period of stability.Which coincidentally started with my taking L.D.N. I am disappointed that my health care professionals?' never told me about this before, but now I understand their reluctance to recommend this. This took me about four months of research to achieve so how could they with their schedules even come close to accepting LDN as a treatment with their limited time?( their vacations and golf is important too) I guess we have to accept the fact that like how M.S. affects everyone different also L.D.N. will affect everyone different. Reg. -------Original Message------- From: low dose naltrexone Date: 07/13/04 07:47:19 low dose naltrexone Subject: [low dose naltrexone] Improvements I hate to be something of a wet blanket, but I keep seeing all of these posts from folks who are not "improving" while on LDN, and "waiting for LDN to kick in". I know many people do see improvements, but isn't the expectation from LDN actually an end to the progression of the disease? Recovering lost abilities is a great thing, and in some cases LDN seems to be helping people do so, but progression is the target here. People new to the site are going to start taking LDN and expecting miracles, and then will doubt the med is doing anything for them. Improved strength, balance, bladder control, seem to be pretty common responses, but just staying the same is also an LDN success. Are some of the success stories creating unrealistic expectations for people just starting their LDN journey? ____________________________________________________ IncrediMail - Email has finally evolved - Click Here Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2004 Report Share Posted July 13, 2004 The expectations, even I had, I must admit in the beginning were big. I saw everyone on this sight posting about the 2nd and 3rd day, or 1 week improvements, and I continue to see people complaining or not having their expectations met. Even in spreading my own word about this medication, I admit, now looking back, that I was overdoing it, and giving false impressions. LDN is what it is - a boost in general health - and the rest is up to us to enhance and improve on. I'm grateful it exists though, before LDN, I had NOTHING. I didnt even talk about MS or show an interest in myself. Friday wrote: > >But I hope people will not quit taking it because there aren't instant changes in their condition. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2004 Report Share Posted July 13, 2004 Hi You are right, if the LDN stops the progression that is a big plus. My last MRI showed that my progression has been stoped. My right leg is in tough shape and I really never expect to get that back but I am pleased with the way that I feel. More energetic, balance has improved, muscle spasms have eased up. But inside I feel like my old self. I almost forgot what that felt like. I am happy with my improvements even though it doesn't go any further than this. Wishing the best to everyone. Marie ----- Original Message ----- From: low dose naltrexone Sent: Tuesday, July 13, 2004 9:44 AM Subject: [low dose naltrexone] Improvements I hate to be something of a wet blanket, but I keep seeing all of these posts from folks who are not "improving" while on LDN, and "waiting for LDN to kick in". I know many people do see improvements, but isn't the expectation from LDN actually an end to the progression of the disease? Recovering lost abilities is a great thing, and in some cases LDN seems to be helping people do so, but progression is the target here. People new to the site are going to start taking LDN and expecting miracles, and then will doubt the med is doing anything for them. Improved strength, balance, bladder control, seem to be pretty common responses, but just staying the same is also an LDN success. Are some of the success stories creating unrealistic expectations for people just starting their LDN journey? Quote Link to comment Share on other sites More sharing options...
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