Guest guest Posted October 29, 2005 Report Share Posted October 29, 2005 In a message dated 10/29/2005 8:47:20 AM Central Daylight Time, mlfraser@... writes: I have been diagnosed primary progressive ms, and have been told > there's nothing that can be done. I found ldn while researching > primary progressiv me, and am desperate to find out more info about it > before i see my new neuro on 11/15 > any help would be appreciated, especially if you have the same dx and > are taking ldn. thanks! +++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++ I, too, am PPMS. Took Avonex for 2 years but ended up in the wheelchair anyway. Obviously, it didn't work for me! I had my Mercury Amalgams removed and seemed to lose the 'brain fog' situation. I chelated quite a bit. I really try to eat healthy. I started DHEA 25mg per day and Pregnenolone 30mg per day, and, after 6 months, my Optic Neuritis went away and has not returned. I started LDN 2 years ago. I saw great relief with bladder issues, no more L'Hermettes sensations, and the constricting pain around my waist went away. I had about 2 - 3 weeks of sleepless nights, but that ended. I recommend LDN highly. The CRAB drugs don't work, in my opinion. I just saw a new doctor who did some tests and determined that I do have a viral overload. He thinks this is the CAUSE of all of my symptoms. So now I am on two anti-viral drugs too. I do feel better. Hang in there! Be ready for the new Neuro to push the CRABs or chemo on you. Make an informed decision whatever you decide! Marcie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2005 Report Share Posted October 29, 2005 Hi Sun Shine, My wife has had PPMS since Dec. 2000 She was then 60years old and had her first attack. She has been on 4.5 mgs LDN since 1/2/2005 and had a few sleepless nights to start with but since then has had no side effects and seems to be holding her own. The only thing at the moment is her blood pressure which is very erratic. She will go for 2/3 weeks being very well and then her BP will go up and down like a yoo-yoo and she feels ghastly for a couple of days. Our Neuro and GP where quite happy to give us a script for LDN. Reading your email below we in South Africa still put the day/month/year as above--just to clear the point. All the best with the MonSter and your new Neuro. Malcolm [low dose naltrexone] LDN and PP MS >I have been diagnosed primary progressive ms, and have been told > there's nothing that can be done. I found ldn while researching > primary progressiv me, and am desperate to find out more info about it > before i see my new neuro on 11/15 > any help would be appreciated, especially if you have the same dx and > are taking ldn. thanks! > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2005 Report Share Posted October 29, 2005 --- In low dose naltrexone , " sunshinesteelersdoc " <as13@v...> wrote: > > I have been diagnosed primary progressive ms, and have been told > there's nothing that can be done. I found ldn while researching > primary progressiv me, and am desperate to find out more info about it > before i see my new neuro on 11/15 > any help would be appreciated, especially if you have the same dx and > are taking ldn. thanks! > ======= I was dx'd MS before we had all the new fancy MS labels. I was dx'd chronic progressive MS in 1989. I was desperate and at the end of my rope when I tried 4.5mg LDN. LDN saved me. I started LDN 2 years & 3 months ago. My MS progression has been halted dead in its tracks for 2 years & 3 months. My LDN site might help you learn more about LDN. The link is below. Low Dose Naltrexone Forum - Home http://ldn.proboards3.com/index.cgi? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2005 Report Share Posted October 29, 2005 My husband was diagnosed with PPMS last spring. He has been on the Best Bet Diet for 9 months and LDN for 4 months. It seems to be helping as he is gaining some sensation in his feet and his walking appears to have improved a little. Try LDN at 3.0 first to get used to it. 4.5 was too high a dosage for him. Be sure to bring a lot of research with you. Be convincing but not desperate. Good luck. Louise > > I have been diagnosed primary progressive ms, and have been told > there's nothing that can be done. I found ldn while researching > primary progressiv me, and am desperate to find out more info about it > before i see my new neuro on 11/15 > any help would be appreciated, especially if you have the same dx and > are taking ldn. thanks! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2005 Report Share Posted October 29, 2005 I told my neuro that I KNOW its possible that LDN will do absolutely nothing for me but that it has helped a few and I want to give it a try.AFter all there is nothing else that can be done so waht harm can it do? I guess this line of reasoning works, at least it did wit my neuro.Believe me , i was surprised that he said OK as he is quite conservative. But i know i am right because he didnt even consider the CRAB drugs for me.....onl y steroids. And he knows they dont do much. So just let your doc know that you are not being TOOOOO optimistic bu t are being realistic about this .I think doctors are aware of all the snake oil things being pedalled off on people with MS and they are wary of us patients being sucked into something ridiculous. So let hiim know that you are aware that there is a lot of junk out there but know tha t this has helped " a few people" and that it may not help you.That way the doc wont feel like you are headed for a letdown that he will feel responsible for. Nola [low dose naltrexone] Re: LDN and PP MS My husband was diagnosed with PPMS last spring. He has been on the Best Bet Diet for 9 months and LDN for 4 months. It seems to be helping as he is gaining some sensation in his feet and his walking appears to have improved a little. Try LDN at 3.0 first to get used to it. 4.5 was too high a dosage for him.Be sure to bring a lot of research with you. Be convincing but not desperate. Good luck.Louise>> I have been diagnosed primary progressive ms, and have been told > there's nothing that can be done. I found ldn while researching > primary progressiv me, and am desperate to find out more info about it > before i see my new neuro on 11/15> any help would be appreciated, especially if you have the same dx and > are taking ldn. thanks!> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2005 Report Share Posted October 30, 2005 My husband has PPMS and is on LDN since sept 2002 with no progression whatsoever. All the Best Bradley > > > > I have been diagnosed primary progressive ms, and have been told > > there's nothing that can be done. I found ldn while researching > > primary progressiv me, and am desperate to find out more info about it > > before i see my new neuro on 11/15 > > any help would be appreciated, especially if you have the same dx and > > are taking ldn. thanks! > > > ======= > > I was dx'd MS before we had all the new fancy MS labels. I was dx'd chronic progressive MS in 1989. I was desperate and at the end of my rope when I tried 4.5mg LDN. LDN saved me. I started LDN 2 years & 3 months ago. My MS progression has been halted dead in its tracks for 2 years & 3 months. My LDN site might help you learn more about LDN. The link is below. > > Low Dose Naltrexone Forum - Home > http://ldn.proboards3.com/index.cgi? > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2006 Report Share Posted June 11, 2006 , Hi ! You answered my post a long time ago (Oct), and I just today found it !! I am now taking 4.5 mg. LDN, started at 3.0 mg. = have been on the higher dose for less than a month. The neuro that prescribes it for me seems to know less about it than I, but he IS willing to prescribe it - thank goodness !! So far I have not seen any improvement, and my walking has slowed - I still have bad balance, and TERRIBLE fine motor skills, but I'm coping.... somehow My next hurdle I guess, is getting SS disability. I've been turned down once, and I do have a disability lawyer working onit. I am nervous becasue I live alone - no close family - and the AFLAC insurance that I am living on now expires in OCT. they cover you for a year and I was put on medical leave in Oct of 05. any suggesteions would be appreciated. sorry it took so long to get back to you and please read my last post for more details Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2006 Report Share Posted June 11, 2006 Getting disability. I had a friend here in Los Angeles act as my attorney, and I had no problem getting it! Need his name and number? Meredith Sent from my BlackBerry wireless handheld. [low dose naltrexone] Re: LDN and PP MS , Hi ! You answered my post a long time ago (Oct), and I just today found it !! I am now taking 4.5 mg. LDN, started at 3.0 mg. = have been on the higher dose for less than a month. The neuro that prescribes it for me seems to know less about it than I, but he IS willing to prescribe it - thank goodness !! So far I have not seen any improvement, and my walking has slowed - I still have bad balance, and TERRIBLE fine motor skills, but I'm coping.... somehow My next hurdle I guess, is getting SS disability. I've been turned down once, and I do have a disability lawyer working onit. I am nervous becasue I live alone - no close family - and the AFLAC insurance that I am living on now expires in OCT. they cover you for a year and I was put on medical leave in Oct of 05. any suggesteions would be appreciated. sorry it took so long to get back to you and please read my last post for more details Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2006 Report Share Posted June 11, 2006 just a note to say that i have been on ldn for 15 months now and i have ppms. my mri's were all stabile last month for the year. where abouts are you? i'm on long island in ny. al my best, joanna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2006 Report Share Posted June 19, 2006 I have ppms. I am off the betaseron as of last night. I really want to try the ldn. I asked the neuro he denied. I am going to ask my doc for a script.Is it working for you Joanna? I am in SFValley,CA Sorry if I butted in on a conversation. I am new to the group.That means reading, and posting.The whole thing really. joanna epstein <zeet2000@...> wrote: just a note to say that i have been on ldn for 15 months now and i have ppms. my mri's were all stabile last month for the year. where abouts are you? i'm on long island in ny. al my best, joanna Sneak preview the all-new .com. It's not radically different. Just radically better. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2006 Report Share Posted June 19, 2006 I am in month 3 of LDN with PPMS. I take 4.5mg now and I think I have nipped some major symptoms in the bud. I have gone from elec wheelchair back to walker and even cane for 20 steps or so……in a few weeks…..I don’t know what to attribute to LDN vs everything else but there none theless From: low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of MICHELE LAURITZEN Sent: Sunday, June 18, 2006 11:40 PM To: low dose naltrexone Subject: Re: [low dose naltrexone] Re: LDN and PP MS I have ppms. I am off the betaseron as of last night. I really want to try the ldn. I asked the neuro he denied. I am going to ask my doc for a script.Is it working for you Joanna? I am in SFValley,CA Sorry if I butted in on a conversation. I am new to the group.That means reading, and posting.The whole thing really. joanna epstein <zeet2000@...> wrote: just a note to say that i have been on ldn for 15 months now and i have ppms. my mri's were all stabile last month for the year. where abouts are you? i'm on long island in ny. al my best, joanna Sneak preview the all-new .com. It's not radically different. Just radically better. Quote Link to comment Share on other sites More sharing options...
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