Guest guest Posted December 5, 2004 Report Share Posted December 5, 2004 Is there anyone who reads this or knows about anyone with ALS taking LDN and what is their experience. I know it has been tried by a handful or more with mixed results in the past but the new article in Medical Hypothesis stating mechanisms very similar to what is being looked at in ALS has me interested. Thanks. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2004 Report Share Posted December 6, 2004 Hello, I have MND (ALS) and because a couple of members of the OZPALS MND group were taking LDN I decided to give it a try. Due to a lot of hiccups I have only been taking it full strength (3mg) for a week. (I started at 1.5mg and slowly worked up to 3mg over 2 weeks) It is too early for definite results but I feel my swallowing is easier - I know I am able to get more liquid down more often anyway. As with everything time will tell. > > Is there anyone who reads this or knows about anyone with ALS taking > LDN and what is their experience. I know it has been tried by a > handful or more with mixed results in the past but the new article in > Medical Hypothesis stating mechanisms very similar to what is being > looked at in ALS has me interested. Thanks. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2004 Report Share Posted December 6, 2004 Gayle, Can you tell me how the others with MND are doing and why they recommended it? Thanks. Someone asked, Yes I have ALS. > > > > Is there anyone who reads this or knows about anyone with ALS > taking > > LDN and what is their experience. I know it has been tried by a > > handful or more with mixed results in the past but the new article > in > > Medical Hypothesis stating mechanisms very similar to what is > being > > looked at in ALS has me interested. Thanks. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2004 Report Share Posted December 6, 2004 Hi, See http://www.low dose naltrexone.org/others.htm, right near the bottom. It is something I wrote up for the most recent newsletter of the Motor Neurone Disease Association of (MNDAV), ALS being the usual form of MND. It is about myself with PLS, like Parli, and also describes the benefits that the other three people I knew of on OZPALS who have been using LDN for their ALS have felt after I spread the word on there about it. (That was before Gayle started.) Going back to one of your comments in a previous email, bladder problems are actually more the norm than the exception for those of us with PLS. Many neuros think bladder problems are not associated with PLS, but that was obviously based on previous statistically incorrect data given that PLS is so rare (many, many times rarer than ALS or MS). It is only in these days of the internet when some 50 to 100 PLSers regularly or occasionally share information on PLS-FRIENDS group (like this low dose naltrexone group and OZPALS) that we find that many of us have bladder problems. Bladder problems are not so common with ALS, though not rare either. endalsnow wrote: > > Gayle, > Can you tell me how the others with MND are doing and why they > recommended it? Thanks. Someone asked, Yes I have ALS. > > > > > > > Hello, > > > > I have MND (ALS) and because a couple of members of the OZPALS MND > > group were taking LDN I decided to give it a try. Due to a > > lot of hiccups I have only been taking it full strength (3mg) for a > > week. (I started at 1.5mg and slowly worked up to 3mg over 2 > > weeks) It is too early for definite results but I feel my > > swallowing is easier - I know I am able to get more liquid down > more > > often anyway. As with everything time will tell. > > -- . ,-._|\ Covington / Oz \ \_,--.x/ v Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2004 Report Share Posted December 6, 2004 If you find that link doesn't work try http://www.low dose naltrexone.org/others.htm (your email program may include the comma I put after the original link as part of the link). C wrote: Hi, See http://www.low dose naltrexone.org/others.htm, right near the bottom. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2005 Report Share Posted November 19, 2005 > > I know someone who has just been Dx;d with ALS can anyone here give > me any info on it and LDN. > Is there anyone on the board who has it and uses LDN > Thank you in Advance > > ======== There are zero successful FDA approved treatments for ALS. The only treatment that has helped some ALS patients is LDN but I don't know much more than that. Have your friend start LDN immediately. The sooner treatment with 4.5mg LDN is started, hopefully a better chance they'll have at slowing down their progression. Quote Link to comment Share on other sites More sharing options...
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