Guest guest Posted August 9, 2004 Report Share Posted August 9, 2004 Hi Fellow LDNers. It's been awhile since i've posted here. I hope you are all getting along ok. I have been on another forum, where there are quote a few PPMSers, and they all ask the same question...When are they going to come out with a Med for PPMS. We all know that the CRABs don't help and even Navatrone doesn't help the PPMSers. The new Antegren is only for RRMS, so I understand their angst. Are there any people here with PPMS who are on LDN? If so, has it helped you with any symptom relief or do you feel that is is slowing the progression of your MS? I really would love to report back to these nice people that there is something out there to help them, if even a small way. Thank you so much. Be Well, SallyC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2004 Report Share Posted August 10, 2004 I also am a progressive MSer probably SPMS as I never had any "attacks" per say. For well over twenty years I have watched me loose a little more of my self until almost a year ago now. I started on L.D.N. at 4.5mgs and then cut back to 3.0 mgs where I have been for nine months now. In that time I have actually regained a little mobility, all my bladder control, and feel great most days. I no longer have L'Hermettes or any eye problems or nueropathic pain. In fact all the reasons I had to quit work and go on disability are gone. But we will not tell C.P.P. OK ?I still have the odd bad day but hey I have M.S. and will probably always have it. Finding LDN has been the high light in my life! I highly recommend it. Reg. -------Original Message------- From: low dose naltrexone Date: 08/09/04 20:20:10 low dose naltrexone Subject: Re: [low dose naltrexone] PPMS and LDN I have PPMS and have just started LDH (now in third week) so it make a whileto notice any change.been on ldl----- Original Message ----- From: "Sally" <sal.pal@...><low dose naltrexone >Sent: Monday, August 09, 2004 5:38 PMSubject: [low dose naltrexone] PPMS and LDN> Hi Fellow LDNers. It's been awhile since i've posted here. I hope> you are all getting along ok.>> I have been on another forum, where there are quote a few PPMSers,> and they all ask the same question...When are they going to come out> with a Med for PPMS.>> We all know that the CRABs don't help and even Navatrone doesn't> help the PPMSers. The new Antegren is only for RRMS, so I> understand their angst.>> Are there any people here with PPMS who are on LDN? If so, has it> helped you with any symptom relief or do you feel that is is slowing> the progression of your MS?>> I really would love to report back to these nice people that there> is something out there to help them, if even a small way.>> Thank you so much.>> Be Well,>> SallyC>>>>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2004 Report Share Posted August 10, 2004 What great news Marcie, Sounds like you've finally found the right formula! With a powerful, positive mind we have no limitations! Good luck, From: marciemjm@... [mailto:marciemjm@...] Sent: Monday, August 09, 2004 10:22 PMlow dose naltrexone Subject: Re: [low dose naltrexone] PPMS and LDN Sally, I'm PPMS. I've been in a wheelchair for almost 5 years. No balance whatsoever. Bad bladder issues. Just getting in and out of bed or on and off the toilet has been difficult for 5 years. Constant burning sensation in lower legs and feet, some days are worse than others. Sound sleep was nonexistent due to getting up to go to the restroom 6 - 8 times per night. The electrical sensations happened when I would bend my head forward, and I had the constricting band feeling around my waist nearly all the time. All of this was prior to LDN. I started using bee venom therapy last August and saw some slight improvement in bladder issues and added energy. I still use the bees. I began LDN (3mg) last November. Immediately, I saw drastic improvement in bladder issues. I would say 75% improvement. After about 3 weeks, I began to sleep anywhere from 4 - 7 hours without waking up. Naturally, I had more energy. After 3 months, I upped the dose to 4.5mg. I had no problems with this. I did start to notice that my levels of pain seemed to be more stable. Not as much fluctuation. After reading about Dr. Bahari (sp?) putting a couple of patients on 6mg for various reasons, I decided to try it and am very satisfied. I no longer have the electrical impulses or the constricting feeling around my waist. I don't really know when this happened. My strength is much better. It's still a job to get in and out of bed or on and off the toilet but not quite so hard. Without LDN, I don't think any of this would have been possible. I do believe it has stopped the progression in me. I do wish that I would have known about LDN sooner. My advice to anyone diagnosed is to get on LDN ASAP! Don't waste time with traditional medicine's mumbo jumbo! You're on your own anyway, so take charge and do something that might actually help. Traditional medicine has it's place, don't get me wrong, it's just that where MS is concerned, they really don't know enough to really help. My opinion. Marcie In a message dated 8/9/2004 4:39:28 PM Central Standard Time, sal.pal@... writes: there any people here with PPMS who are on LDN? If so, has it helped you with any symptom relief or do you feel that is is slowing the progression of your MS? I really would love to report back to these nice people that there is something out there to help them, if even a small way. Thank you so much. Be Well, SallyC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2004 Report Share Posted August 10, 2004 take it your from Canada (CPP) :-) I AM ALSO SPMS (secondary progressive?) From Chatham ON. What pharmacy prepare the LDN you take? ----- Original Message ----- From: Reg Kreil low dose naltrexone Sent: Tuesday, August 10, 2004 11:38 AM Subject: Re: [low dose naltrexone] PPMS and LDN I also am a progressive MSer probably SPMS as I never had any "attacks" per say. For well over twenty years I have watched me loose a little more of my self until almost a year ago now. I started on L.D.N. at 4.5mgs and then cut back to 3.0 mgs where I have been for nine months now. In that time I have actually regained a little mobility, all my bladder control, and feel great most days. I no longer have L'Hermettes or any eye problems or nueropathic pain. In fact all the reasons I had to quit work and go on disability are gone. But we will not tell C.P.P. OK ?I still have the odd bad day but hey I have M.S. and will probably always have it. Finding LDN has been the high light in my life! I highly recommend it. Reg. -------Original Message------- From: low dose naltrexone Date: 08/09/04 20:20:10 low dose naltrexone Subject: Re: [low dose naltrexone] PPMS and LDN I have PPMS and have just started LDH (now in third week) so it make a whileto notice any change.been on ldl----- Original Message ----- From: "Sally" <sal.pal@...><low dose naltrexone >Sent: Monday, August 09, 2004 5:38 PMSubject: [low dose naltrexone] PPMS and LDN> Hi Fellow LDNers. It's been awhile since i've posted here. I hope> you are all getting along ok.>> I hav e been on another forum, where there are quote a few PPMSers,> and they all ask the same question...When are they going to come out> with a Med for PPMS.>> We all know that the CRABs don't help and even Navatrone doesn't> help the PPMSers. The new Antegren is only for RRMS, so I> understand their angst.>> Are there any people here with PPMS who are on LDN? If so, has it> helped you with any symptom relief or do you feel that is is sl owing> the progression of your MS?>> I really would love to report back to these nice people that there> is something out there to help them, if even a small way.>> Thank you so much.>> Be Well,>> SallyC>>>>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2004 Report Share Posted August 12, 2004 Simple Mark Actually I was having too much trouble with arm stiffness and walking on 4.5 or even 6.0 when I tried it for three days, so I went back to 3.0 and I guess I have to stay there! I have come to believe that some stiffness is a normal part of M.S.and as Tom says we must stretch out the stiffness, that does help somewhat but I don't have a very good exercise program, so I forget to do any exercises until I am almost seized up. Reg. -------Original Message------- From: low dose naltrexone Date: 08/11/04 15:07:42 low dose naltrexone Subject: RE: [low dose naltrexone] PPMS and LDN Can I ask why you went to 3.0mgs from 4.5mgs. thanks Mark Cooke -----Original Message-----From: Reg Kreil [mailto:regkreil@...] Sent: 10 August 2004 16:38low dose naltrexone Subject: Re: [low dose naltrexone] PPMS and LDN I also am a progressive MSer probably SPMS as I never had any "attacks" per say. For well over twenty years I have watched me loose a little more of my self until almost a year ago now. I started on L.D.N. at 4.5mgs and then cut back to 3.0 mgs where I have been for nine months now. In that time I have actually regained a little mobility, all my bladder control, and feel great most days. I no longer have L'Hermettes or any eye problems or nueropathic pain. In fact all the reasons I had to quit work and go on disability are gone. But we will not tell C.P.P. OK ?I still have the odd bad day but hey I have M.S. and will probably always have it. Finding LDN has been the high light in my life! I highly recommend it. Reg. -------Original Message------- From: low dose naltrexone Date: 08/09/04 20:20:10 low dose naltrexone Subject: Re: [low dose naltrexone] PPMS and LDN I have PPMS and have just started LDH (now in third week) so it make a whileto notice any change.been on ldl----- Original Message ----- From: "Sally" <sal.pal@...><low dose naltrexone >Sent: Monday, August 09, 2004 5:38 PMSubject: [low dose naltrexone] PPMS and LDN> Hi Fellow LDNers. It's been awhile since i've posted here. I hope> you are all getting along ok.>> I have been on another forum, where there are quote a few PPMSers,> and they all ask the same question...When are they going to come out> with a Med for PPMS.>> We all know that the CRABs don't help and even Navatrone doesn't> help the PPMSers. The new Antegren is only for RRMS, so I> understand their angst.>> Are there any people here with PPMS who are on LDN? If so, has it> helped you with any symptom relief or do you feel that is is slowing> the progression of your MS?>> I really would love to report back to these nice people that there> is something out there to help them, if even a small way.>> Thank you so much.>> Be Well,>> SallyC>>>>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2007 Report Share Posted April 11, 2007 Dear Effiya, Please refer to the "welcome e-mail". That explains that everyone is different and that no one can predict exactly how any one person will be effected by LDN. Some people get great relief, some minor relief and there are a few that do not see any symptom relief at all. The most important thing to hope for is lack of progression which appears to be 85% of people with MS. I am not certain but I don't think that those with PPMS have a different rate of symptom relief (percentage wise) than those with other levels of MS. The one thing I know for sure is that there have been a small percentage of people that have gotten out of wheel chairs. So, how do you know if you would get this miraculous of a recovery or not? Only by trying LDN will one know how they will be effected. In my book it is worth the gamble (what gamble, it is cheap, it is easy to take and it is non-toxic). My best Aletha [low dose naltrexone] PPMS and LDN Does LDN help PPMS and at what dose? Thanks. Effiya. Get your own web address.Have a HUGE year through Small Business. Quote Link to comment Share on other sites More sharing options...
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