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 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. > > > I was diagnosed as having the early stages of ALS almost a year ago today. There are some treatments, although I would agree that they have not been overly successful. However, there are many clinical trials being conducted for ALS, and I would certainly look into those. I also am looking to hear about ldn for treatment of ALS, so any info would be greatly appreciated. I am aware that there has been some mention of help with lung involvement in a couple of people, but I am currently most affected in my legs. I have not yet started ldn, but I certainly would have your friend ask his/her neurologist if it can be tried. It will be a hard decision for your friend to make as to what treatments to try...and I wish him the best of luck. Please let me know how he/she is doing and if ldn is tried! Cath Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2005 Report Share Posted November 19, 2005 , Really the only 'recognised' treatment for ALS is Rilutek, which if you have to pay for it is very expensive and of marginal value - may extend life by a few months at most. I have a form of motor neurone disease and LDN has certainly helped, as it has several others I know of with significant slowing of their progression and/or some symptom relief. Others aren't yet sure but given the low cost and no side effects after some potential initial minor ones (increased insomnia and stiffness) are sticking with it as you need to give it possibly 9 months to a year to have an effect. See near the very bottom of http://www.low dose naltrexone.org/others.htm wrote: > 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 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2005 Report Share Posted November 19, 2005 I have possibly given the wrong impression there with my statement " you need to give it possibly 9 months to a year to have an effect " . What I meant is that even if nothing seems to be happening you need to stick with it for 9 - 12 months as it takes that long in some people to start working. I was lucky in that I felt a difference after a week or so but admittedly it was only after almost exactly 9 months that my urinary urgency suddenly improved. C wrote: > , > > Really the only 'recognised' treatment for ALS is Rilutek, which if you > have to pay for it is very expensive and of marginal value - may extend > life by a few months at most. I have a form of motor neurone disease > and LDN has certainly helped, as it has several others I know of with > significant slowing of their progression and/or some symptom relief. > Others aren't yet sure but given the low cost and no side effects after > some potential initial minor ones (increased insomnia and stiffness) are > sticking with it as you need to give it possibly 9 months to a year to > have an effect. See near the very bottom of > http://www.low dose naltrexone.org/others.htm > > > > wrote: > > > 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 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2007 Report Share Posted April 12, 2007 , Thanks for the info!! I will pass that along to my friend. Janet C <covo@...> wrote: Hi Janet,I know of quite a few people who have tried it for ALS, some with great success, others not. I must admit that those I know of who didn't find it seemed to help were not getting it from a recommended pharmacy as far as I know, so that may have been their problem. They also didn't stick with it for 9 months as suggested, which particularly in the case of such a nasty condition as ALS may be required before seeing signs that it works. I don't have ALS but PLS, a close cousin and found slight improvements in my walking fairly quickly but after about 9 months my urinary urgency problems suddenly improved significantly.For lots of ALS/PLS info see http://www.low dose naltrexone.org/others.htm and go to Neurodegenerative Disease - Primary Lateral Sclerosis and ALS (Lou Gehrig's Disease) near the bottom of the page. Most definitely worth trying but get it from a recommended supplier and stick to it for at least 9 months.Janet Kunselman wrote:> Has anyone ever heard of treating ALS with LDN?>> Thanks,> Janet Sucker-punch spam with award-winning protection. Try the free Beta. Quote Link to comment Share on other sites More sharing options...
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