Guest guest Posted June 7, 2003 Report Share Posted June 7, 2003 WELCOME TO THE GROUP. I WAS DX WITH RRMS IN 1972 AND SPMS IN 1997. I HAVEN'T HAD THE WONDERFUL RESULTS WITH LDN LIKE EVERYONE ELSE. I STARTED ON THE 4.5 MG AND FOR THE FIRST FEW DAYS IT WAS WONDERFUL. THEN I BEGAN TO EXPERIENCE SEVERE LEG SPASMS AT NIGHT------SOMETHING I'D NEVER EXPERIENCED BEFORE. SO I CUT BACK TO 3 MG. AND NOTHING CHANGED. I HAD TO GET OFF OF ALL MEDS FOR 2 DAYS TO DO A URINALYSIS AND HAVEN'T BEGUN LDN AGAIN. IT'S BEENA WEEK AND I'M STILL TRYING TO DECIDE WHETHER OR NOT TO GIVE IT ANOTHER TRY. FROM READING ALL THE WONDERFUL RESULTS EVERYONE IS HAVING, I REALLY WANT TO GIVE IT ONE MORE SHOT. CAROL'S TESTIMONY WAS AN INSPIRATION TO ME AND MAKES ME WONDER WHY I HAVEN'T STARTED IT AGAIN. I WISH YOU THE BEST. I HAVE ONE PERSONAL QUESTION-----------ARE YOU MALE OR FEMALE? IN MY MIND I'M DOING A LITTLE " STUDY " OF HOW MANY FEMALES AND HOW MANY MALES ARE VICTIMS OF THIS DISEASE. HOW MANY RRMS AND HOW MANY PPMS ETC.ETC. JUST IN THIS GROUP Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2004 Report Share Posted August 9, 2004 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 I have PPMS and have just started LDH (now in third week) so it make a while to notice any change. been on ldl ----- Original Message ----- From: " Sally " <sal.pal@...> <low dose naltrexone > Sent: Monday, August 09, 2004 5:38 PM Subject: [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 Hi Sally, Please take a look at the survey reports that are comprosed on 267 LDN users. Almost half were in the progressive category, and still had very high reported symptom improvement, and progression stopping. As you point out none of the other drugs are effective. We are all working hard to get trials started, so this data can be investigated fully. Here are the reports, let me know if you have any questions! http://ldners.org/surveys.htm SammyJo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2004 Report Share Posted August 10, 2004 I can't get the total report Sammy. It's Excel or something my computer won't read it. If you could copy the report and e-mail it, I would appreciate that. I am only interested in the PPMS reports and how LDN has helped them. Thanks, Sally P.S. I had already taken the survey..<smile> > Hi Sally, > Please take a look at the survey reports that are comprosed on 267 > LDN users. Almost half were in the progressive category, and still > had very high reported symptom improvement, and progression stopping. > As you point out none of the other drugs are effective. We are all > working hard to get trials started, so this data can be investigated > fully. > > Here are the reports, let me know if you have any questions! > http://ldners.org/surveys.htm > > SammyJo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2004 Report Share Posted August 10, 2004 Thanks Marcie, Your report helps a lot. I hope it will convince other PPMSer to try LDN. Thanks again and continued success for you and LDN. Love, Sally > 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@e... 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 Thanks you Fbush, I hope LDN is a big success for you. I will check back with you later Love, Sally --- In low dose naltrexone , " f.bush " <f.bush@m...> wrote: > I have PPMS and have just started LDH (now in third week) so it make a while > to notice any change. > been on ldl > ----- Original Message ----- > From: " Sally " <sal.pal@e...> > <low dose naltrexone > > Sent: Monday, August 09, 2004 5:38 PM > Subject: [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 Marci- I'm so happy for your success! Mona Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2004 Report Share Posted August 11, 2004 I live in Alberta Canada and I use "The Dispensary" in RedDeer It never took a lot to get him trained in how we need it formulated and Joe (the owner) is really willing to bend over backwards to accomodate you. He now keeps 1.5mg and 3.0mg. caps on hand and will make up any strength you want. He never complained at all when I got my first batch ever in 1.5 mg pills in fact he recommended it so that I could adjust my dose as needed. Reg. -------Original Message------- From: low dose naltrexone Date: 08/10/04 11:48:28 low dose naltrexone Subject: Re: [low dose naltrexone] PPMS and LDN 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 11, 2004 Report Share Posted August 11, 2004 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 16:38 To: low 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 while to notice any change. been on ldl ----- Original Message ----- From: " Sally " <sal.pal@...> <low dose naltrexone > Sent: Monday, August 09, 2004 5:38 PM Subject: [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...
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