Re: Re: FVC test result (First report - ALS - Six weeks on LDN)

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Great news Brendon, spread the word.Trish From: low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of Burd27Sent: Wednesday, 1 December 2010 11:00 PMlow dose naltrexone Subject: [low dose naltrexone] Re: FVC test result (First report - ALS - Six weeks on LDN) Hi all again,Just thought I would update you with my lung function (FVC) test result.Normally I am tested every three months and since my diagnosis my FVChas consistently dropped by between 4 & 6% each time. This testyesterday was actually just over three and a half months since the lasttest, so I would expect that the test would had come out with a 5 or 6 %drop. However, the good news is that it had only dropped 2%! Yippie!!!That 2% drop instead of say 6%, I believe is due to the fact that forthe past six weeks I have been on LDN. The specialist was mostsurprised.I told my neuro the day before that I had begun taking LDN. She hadheard of it, but not being used with ALS/MND patients. She wassurprised to hear of my improvements and perceived plateauing. She saidthat if I continue to do well on it, then they might conduct their owntrials on LDN. She is part of a neuro team in a neuro ward in ahospital. So I was encouraged by her positive response.Thanks again for all your support & encouraging replies.-n>> Hi all,>> Thought I'd shared how my time on LDN has gone thus far. I have ALS,> bulbar onset, dx'ed March 2009.>> At the point of commencing taking LDN, my condition was as follows:> - Still mobile arms and legs, but weak - for the two weeks before LDN> the range of motion in my arms was becoming noticeably more limited.> - Head drop becoming a problem and causing major discomfort/pain inneck> due to weak neck muscles;> - Speech was unintelligible to basically everyone;> - Mucus starting to become an issue (had two mucus stridor attacks in> weeks before LDN) - need to dilute thickened saliva becoming very> frequent.> - Lung function restricted (FVC about 50%)>> I commenced with 1.5mg LDN for one week, 3.0mg for four weeks and at> this point just about done one week at 4.5mg.>> Over the whole time, I have only had about three nights where Iconsider> that my sleep was affected. Each of those times I woke around 3 or 4am> and was not able to return to a deep sleep. Once, I didn't sleep any> more that night and the other two I slept later on between 6:30am and> 9:am . I have not had any issues with " vivid dreams " .>> During the first week I experienced the return of some leg cramping.> This was a big issue early in my dx' , but more recently had fadedaway.> I saw the return of cramping as a positive sign, but after the first> week it settled down again.>> Within a couple of days of LDN, I noticed that my increasing mucus> issues were greatly reduced. No more stridor attacks and need to> dilute thickened saliva has only occurred once.>> No real change in speech quality - yet!>> My strength improved slightly, but again noticeably. My range ofmotion> in arms and legs improved slightly. The restriction in arm motionthat> was coming on before LDN, reversed. Neck muscles feel stronger> Although bringing head up from a looking down position still takes> effort, the continual agonizing pain has reduced by 90%. Mucheasier> to hold head upright.>> Ever since my dx, I could usually notice the steady progression of my> ALS from week to week - only slight variations, but there nonetheless.> Ever since commencing LDN six weeks ago, I have not noticed any> progression at all. There have been the small number of improvementsas> listed above that all came soon after commencement, but otherwise I> seemed to have plateaued for the first time since my dx.>> I normally have a lung function (FVC) test quarterly and due for mynext> one tomorrow. Although I haven't been on LDN for the full threemonths> since last test it will be interesting to see what he result will be,as> since dx, my FVC decline each quarter has been fairly constant.>> So, I am VERY happy with how LDN is helping my ALS condition. I will> definitely be continuing with it. As so many LDN users have said> before me, " I only wish I had found out about it sooner! " >> Thank you to all who on this group who were so helpful in getting meup> and running - and for the continual encouragement.>> - n>

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I agree... Yippie!!! Great results n!AnitaOn Dec 2, 2010, at 8:43 PM, lucretia1419 wrote:Good on you, great to hear about your good results. Please keep posting, we all like to hear a postitive report, and with ALS at that! Brilliant!Silvia>> Hi all again,> > Just thought I would update you with my lung function (FVC) test result.> > Normally I am tested every three months and since my diagnosis my FVC> has consistently dropped by between 4 & 6% each time. This test> yesterday was actually just over three and a half months since the last> test, so I would expect that the test would had come out with a 5 or 6 %> drop. However, the good news is that it had only dropped 2%! Yippie!!!> > That 2% drop instead of say 6%, I believe is due to the fact that for> the past six weeks I have been on LDN. The specialist was most> surprised.> > I told my neuro the day before that I had begun taking LDN. She had> heard of it, but not being used with ALS/MND patients. She was> surprised to hear of my improvements and perceived plateauing. She said> that if I continue to do well on it, then they might conduct their own> trials on LDN. She is part of a neuro team in a neuro ward in a> hospital. So I was encouraged by her positive response.> > Thanks again for all your support & encouraging replies.> > -n