Guest guest Posted May 17, 2007 Report Share Posted May 17, 2007 My daughter (28) was diagnosed MS recently (early April). On the MRI 3 considerable white spots in her spine are visible. Her present complaints are numbness and tingling a.o in her right hand and foot. Otherwise she is doing well. I thorougly studied all i could find on LDN. Also i went through many user's reports..however i noticed: Most patients have a relatively long(er) MS experience and unfortunately many developed serious complaints (mobility, vision, bladder etc) before starting on LDN. Many were on CRAB drugs before. In my daughter's case the Neurologist probably will put pressure on her to start using interferon. Unfortunately I didnot come accross many patients reports of early use of LDN (directly after diagnosis). Obviously I strongly prefer to start LDN rightaway.. no CRAB if possible. But is this the right decision..can experienced LDN users please advice/help me to make the right decision.. fred Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2007 Report Share Posted May 17, 2007 LDN is a great drug for MS, until there is a cure. Good luckSee what's free at AOL.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2007 Report Share Posted May 17, 2007 Fred, After diagnosis in Jan. '96, I used Avonex for 2 years. By that time, Nov '99, I couldn't stand or walk at all. I just wish that I had known about LDN then. The neuro only told me about traditional meds but didn't guarantee that they would help. At that point I was SO desperate that I would have tried anything. I started LDN Nov. '03. I still can't stand or walk, but my MRIs from one month ago, 1 1/2 years ago and '99 show no difference. Neuro told me that he really expected my MRIs to be much worse given my symptoms. Go figure??? If I were in your daughter's place, I'd get on LDN ASAP!!! And only LDN. JMHO. Marcie fdenys <f.denys@...> wrote: My daughter (28) was diagnosed MS recently (early April).On the MRI 3 considerable white spots in her spine are visible.Her present complaints are numbness and tingling a.o in her right handand foot.Otherwise she is doing well.I thorougly studied all i could find on LDN.Also i went through many user's reports..however i noticed:Most patients have a relatively long(er) MS experience and unfortunatelymany developed serious complaints (mobility, vision, bladder etc) beforestarting on LDN.Many were on CRAB drugs before.In my daughter's case the Neurologist probably will put pressure on herto start using interferon.Unfortunately I didnot come accross many patients reports of early useof LDN (directly after diagnosis).Obviously I strongly prefer to start LDN rightaway.. no CRAB ifpossible.But is this the right decision..can experienced LDN users pleaseadvice/help me to make the right decision..fred Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2007 Report Share Posted May 17, 2007 Hi Fred, This site features the testimony of a man who started on LDN only a few months after receiving a diagnosis of MS: http://www.webspawner.com/users/introtoldn/index.html He never used any of the CRAB drugs. My advice is to forget about the CRAB drugs and get your daughter on LDN as soon as possible. Best regards, Cyberguy cyberguy2_2006 My daughter (28) was diagnosed MS recently (early April). On the MRI 3 considerable white spots in her spine are visible. Her present complaints are numbness and tingling a.o in her right hand and foot. Otherwise she is doing well. I thorougly studied all i could find on LDN. Also i went through many user's reports..however i noticed: Most patients have a relatively long(er) MS experience and unfortunately many developed serious complaints (mobility, vision, bladder etc) before starting on LDN. Many were on CRAB drugs before. In my daughter's case the Neurologist probably will put pressure on her to start using interferon. Unfortunately I didnot come accross many patients reports of early use of LDN (directly after diagnosis). Obviously I strongly prefer to start LDN rightaway.. no CRAB if possible. But is this the right decision..can experienced LDN users please advice/help me to make the right decision.. fred Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2007 Report Share Posted May 17, 2007 Hi Fred, My husband started within 3 months of finding out he had MS. I will send you his story. Aletha [low dose naltrexone] Just diagnosed and LDN My daughter (28) was diagnosed MS recently (early April).On the MRI 3 considerable white spots in her spine are visible.Her present complaints are numbness and tingling a.o in her right handand foot.Otherwise she is doing well.I thorougly studied all i could find on LDN.Also i went through many user's reports..however i noticed:Most patients have a relatively long(er) MS experience and unfortunatelymany developed serious complaints (mobility, vision, bladder etc) beforestarting on LDN.Many were on CRAB drugs before.In my daughter's case the Neurologist probably will put pressure on herto start using interferon.Unfortunately I didnot come accross many patients reports of early useof LDN (directly after diagnosis).Obviously I strongly prefer to start LDN rightaway.. no CRAB ifpossible.But is this the right decision..can experienced LDN users pleaseadvice/help me to make the right decision..fred Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2007 Report Share Posted May 17, 2007 Hi Fred I dont post very often but thought I`d respond to yours. My husband went straight onto LDN after his diagnoses about three years ago. Well, as long as it took me to find it anyway, probably within 6 months. His neuro was pushing him to start Avonex but we refused until he`d given LDN a good long trial. He`s been on LDN over two years now and has never taken anything else. HIs last MRI about a year ago showed no progression and he has no new symptoms. He does battle daily with terrible fatigue and he has balance problems and some cognitive issues but he still works every day at a physical job and he is 45. He has no intentions of ever starting the CRAB drugs so until something else comes along he`ll stick with LDN. Good luck with making your decision - maybe give LDN a certain time trial (6 months to a year) and then review things? > > > My daughter (28) was diagnosed MS recently (early April). > On the MRI 3 considerable white spots in her spine are visible. > Her present complaints are numbness and tingling a.o in her right hand > and foot. > Otherwise she is doing well. > > I thorougly studied all i could find on LDN. > > Also i went through many user's reports..however i noticed: > Most patients have a relatively long(er) MS experience and unfortunately > many developed serious complaints (mobility, vision, bladder etc) before > starting on LDN. > Many were on CRAB drugs before. > > In my daughter's case the Neurologist probably will put pressure on her > to start using interferon. > > Unfortunately I didnot come accross many patients reports of early use > of LDN (directly after diagnosis). > Obviously I strongly prefer to start LDN rightaway.. no CRAB if > possible. > > But is this the right decision..can experienced LDN users please > advice/help me to make the right decision.. > > > fred > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2007 Report Share Posted May 17, 2007 Fred,I would encourage her to get on LDN -- sooner rather than later. It is actually really great that she was just diagnosed and her symptoms are relatively mild. I think the LDN would work really well for her. From my limited experience, those of us who get on LDN sooner in our disease progression seem to have the best results. I have never been formally diagnosed with anything (I will soon have another MRI done that is a higher quality MRI, so I'm hoping it will show something). I have MANY MS symptoms (like I was left basically unable to walk for 5 weeks) and within 3 days of starting LDN, I was walking cane-free and walker-free. It was truly amazing!!I would encourage you to do whatever you can to get her to a doctor that will prescribe LDN for her. It could make a serious difference in her disease progression and she may never have to experience any dramatic symptoms. Of course there are no guarantees with LDN, but there are no guarantees with any MS drug and I think her chances of living a "normal" life are far better with LDN than they are with her other options.Good luck to you and your daughter. You are on the right track!!Chrisie> > My daughter (28) was diagnosed MS recently (early April).> On the MRI 3 considerable white spots in her spine are visible.> Her present complaints are numbness and tingling a.o in her right hand> and foot.> Otherwise she is doing well.> > I thorougly studied all i could find on LDN.> > Also i went through many user's reports..however i noticed:> Most patients have a relatively long(er) MS experience and unfortunately> many developed serious complaints (mobility, vision, bladder etc) before> starting on LDN.> Many were on CRAB drugs before.> > In my daughter's case the Neurologist probably will put pressure on her> to start using interferon.> > Unfortunately I didnot come accross many patients reports of early use> of LDN (directly after diagnosis).> Obviously I strongly prefer to start LDN rightaway.. no CRAB if> possible.> > But is this the right decision..can experienced LDN users please> advice/help me to make the right decision..> > fred> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2007 Report Share Posted May 17, 2007 > > > My daughter (28) was diagnosed MS recently (early April). > On the MRI 3 considerable white spots in her spine are visible. > Her present complaints are numbness and tingling a.o in her right hand > and foot. > Otherwise she is doing well. > > I thorougly studied all i could find on LDN. > > Also i went through many user's reports..however i noticed: > Most patients have a relatively long(er) MS experience and unfortunately > many developed serious complaints (mobility, vision, bladder etc) before > starting on LDN. > Many were on CRAB drugs before. > > In my daughter's case the Neurologist probably will put pressure on her > to start using interferon. > > Unfortunately I didnot come accross many patients reports of early use > of LDN (directly after diagnosis). > Obviously I strongly prefer to start LDN rightaway.. no CRAB if > possible. > > But is this the right decision..can experienced LDN users please > advice/help me to make the right decision.. > > > fred > Fred, I've had MS for 18 years. I've used Avonex, Copaxone, Novantrone and gallons of solumedrol. I've been using LDN for over two years and I wish I had known about it sooner. My advice is to stay away from the CRAB drugs and get her on LDN ASAP. Good luck! Artie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2007 Report Share Posted May 17, 2007 that's great, kelli - so, we'll be the sorta NEWBIES, just starting on LDN somewhat at the same time. you'll be approx. one week or so, ahead of me!! prayerfully, we'll both have real good testimonies, as the rest of those in the group!! BLESSINGS TO YOU - marshiris@...See what's free at AOL.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2007 Report Share Posted May 18, 2007 Hi Fred, Sounds similar to my story - I am 29 and was diagnosed last Nov...although knew it was coming to that DX 3 years earlier....I consider myself a relatively new MSer and have had extremely mild attacks, no residual symptoms after each one and no symptoms now...I was prescribed Rebif and only took it for a few months - I hated the bruises that the injections left me with - came across this site and group and started my LDN script only this week....I feel extremely lucky that I discovered LDN so early and I strongly believe after reading a LOT about LDN recently that it is the only drug with actual recorded and testimonally accurate results for MS...The Crab drugs show none... I haven't as yet told my neuro I've stopped Rebif and started LDN - will decide at my next appt if I'll tell her !!! My choice right ... As with everyone else in this group, I too say, start your daughter on LDN as soon as you possibly can....... Good Luck Kelli From: Art Hansen [mailto:rtee54@...] Sent: Friday, 18 May 2007 3:38 AM low dose naltrexone Subject: [low dose naltrexone] Re: Just diagnosed and LDN > > > My daughter (28) was diagnosed MS recently (early April). > On the MRI 3 considerable white spots in her spine are visible. > Her present complaints are numbness and tingling a.o in her right hand > and foot. > Otherwise she is doing well. > > I thorougly studied all i could find on LDN. > > Also i went through many user's reports..however i noticed: > Most patients have a relatively long(er) MS experience and unfortunately > many developed serious complaints (mobility, vision, bladder etc) before > starting on LDN. > Many were on CRAB drugs before. > > In my daughter's case the Neurologist probably will put pressure on her > to start using interferon. > > Unfortunately I didnot come accross many patients reports of early use > of LDN (directly after diagnosis). > Obviously I strongly prefer to start LDN rightaway.. no CRAB if > possible. > > But is this the right decision..can experienced LDN users please > advice/help me to make the right decision.. > > > fred > Fred, I've had MS for 18 years. I've used Avonex, Copaxone, Novantrone and gallons of solumedrol. I've been using LDN for over two years and I wish I had known about it sooner. My advice is to stay away from the CRAB drugs and get her on LDN ASAP. Good luck! Artie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2007 Report Share Posted May 18, 2007 I was diagnosed 3 years ago with MS. I have been on LDN for two now. Do I think it works I'm not sure. After I started I remember noticing less tingling in my arm and face. Was it the LDN or my body recovering? I also did Copaxone and Avonex. I did not have a aversion to the injections, didn't love them but that wasn't the reason I choose to try LDN. Luckily I had a Neurologist who prescribed think that I would stay on Avonex. I moved and could not find a new Dr to prescribe so I get my script via and Dr who has MS and uses the LDN herself. She is a quad so she is much more open but she feels it is working for her. It is such a personal decision. I have not had a MRI in a year and a feel fine so who knows( I still feel stuff every day but nothing that stops me from doing stuff. I am 37 with 2 children and live outside Buffalo,NY. Diagnosed while living outside Chicago. Kim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2007 Report Share Posted May 18, 2007 I started LDN 8 months after I was diagnosed with SPMS and Transverse Myelitis....I did the Betaseron injections the first 8 months and ended up getting a really bad Cellulitis infection in my right upper thigh from the injections and ended up in bed for 3 months because of it and then surgery.... Love & Blessings, Crystal LDN_Users Group Owner Crystal's MS,TM & LDN Website Crystal's LDN Support Group MS & TM Spouse & Caregiver Support Group Crystal's MySpace [low dose naltrexone] Re: Just diagnosed and LDN >> > My daughter (28) was diagnosed MS recently (early April).> On the MRI 3 considerable white spots in her spine are visible.> Her present complaints are numbness and tingling a.o in her right hand> and foot.> Otherwise she is doing well.> > I thorougly studied all i could find on LDN.> > Also i went through many user's reports..however i noticed:> Most patients have a relatively long(er) MS experience and unfortunately> many developed serious complaints (mobility, vision, bladder etc) before> starting on LDN.> Many were on CRAB drugs before.> > In my daughter's case the Neurologist probably will put pressure on her> to start using interferon.> > Unfortunately I didnot come accross many patients reports of early use> of LDN (directly after diagnosis).> Obviously I strongly prefer to start LDN rightaway.. no CRAB if> possible.> > But is this the right decision..can experienced LDN users please> advice/help me to make the right decision..> > > fred>Fred,I've had MS for 18 years. I've used Avonex, Copaxone, Novantrone and gallons of solumedrol. I've been using LDN for over two years and I wish I had known about it sooner. My advice is to stay away from the CRAB drugs and get her on LDN ASAP.Good luck!Artie Looking for earth-friendly autos? Browse Top Cars by "Green Rating" at Autos' Green Center. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2007 Report Share Posted May 18, 2007 Also what most Dr's DON'T tell people is that the CRABS are only suppose to be for Relapsing Remitting MS and NOT all the other types of MS..... Love & Blessings, Crystal LDN_Users Group Owner Crystal's MS,TM & LDN Website Crystal's LDN Support Group MS & TM Spouse & Caregiver Support Group Crystal's MySpace [low dose naltrexone] Re: Just diagnosed and LDN >> > My daughter (28) was diagnosed MS recently (early April).> On the MRI 3 considerable white spots in her spine are visible.> Her present complaints are numbness and tingling a.o in her right hand> and foot.> Otherwise she is doing well.> > I thorougly studied all i could find on LDN.> > Also i went through many user's reports..however i noticed:> Most patients have a relatively long(er) MS experience and unfortunately> many developed serious complaints (mobility, vision, bladder etc) before> starting on LDN.> Many were on CRAB drugs before.> > In my daughter's case the Neurologist probably will put pressure on her> to start using interferon.> > Unfortunately I didnot come accross many patients reports of early use> of LDN (directly after diagnosis).> Obviously I strongly prefer to start LDN rightaway.. no CRAB if> possible.> > But is this the right decision..can experienced LDN users please> advice/help me to make the right decision..> > > fred>Fred,I've had MS for 18 years. I've used Avonex, Copaxone, Novantrone and gallons of solumedrol. I've been using LDN for over two years and I wish I had known about it sooner. My advice is to stay away from the CRAB drugs and get her on LDN ASAP.Good luck!Artie Got a little couch potato? Check out fun summer activities for kids. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2007 Report Share Posted May 18, 2007 IWAS DX IN OCT 2006 I WAS ON BETA SERONE FROM OCT TO APRIL THEN STARTED THE LDN . WOULD LIKE TO CONTACT YOUR DR. SOUNDSGOOD KIM , IM IN THE LONG ISLAND NY AREA. MY MS IS NOT THAT BAD I AM HAVING PROBLEMS WALKING WITH MY RIGHT LEG.IM NOT SURE YET IF THE LDN IS WORKING YET BUT I DO SEE A DIFFERENCE SO FAR.ANY POINTERS YOU CAN SHARE I WOULD APPRECIATE THANKS. [low dose naltrexone] Re:Just diagnosed and LDN I was diagnosed 3 years ago with MS. I have been on LDN for two now. Do I think it works I'm not sure. After I started I remember noticing less tingling in my arm and face. Was it the LDN or my body recovering? I also did Copaxone and Avonex. I did not have a aversion to the injections, didn't love them but that wasn't the reason I choose to try LDN. Luckily I had a Neurologist who prescribed think that I would stay on Avonex. I moved and could not find a new Dr to prescribe so I get my script via and Dr who has MS and uses the LDN herself. She is a quad so she is much more open but she feels it is working for her. It is such a personal decision. I have not had a MRI in a year and a feel fine so who knows( I still feel stuff every day but nothing that stops me from doing stuff. I am 37 with 2 children and live outside Buffalo,NY. Diagnosed while living outside Chicago. Kim__________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2007 Report Share Posted May 18, 2007 hi Fred sorry to hear about your daughter I would start LDN as soon as you can get it I did not learn about it for a while then it took me 8 months to get it but I think people are getting the LDN with less trouble now I am also a member of Joolys Joint which is a nice friendly group which your daughter may like lyn [low dose naltrexone] Just diagnosed and LDN My daughter (28) was diagnosed MS recently (early April). On the MRI 3 considerable white spots in her spine are visible. Her present complaints are numbness and tingling a.o in her right hand and foot. Otherwise she is doing well. I thorougly studied all i could find on LDN. Also i went through many user's reports..however i noticed: Most patients have a relatively long(er) MS experience and unfortunately many developed serious complaints (mobility, vision, bladder etc) before starting on LDN. Many were on CRAB drugs before. In my daughter's case the Neurologist probably will put pressure on her to start using interferon. Unfortunately I didnot come accross many patients reports of early use of LDN (directly after diagnosis). Obviously I strongly prefer to start LDN rightaway.. no CRAB if possible. But is this the right decision..can experienced LDN users please advice/help me to make the right decision.. fred Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2007 Report Share Posted May 21, 2007 Fred, I was diagnosed 20 years ago with similar symptoms of your daughter's with funny symptoms 8 years prior (handwriting wasn't mine). My college roomate said, " Have you tried Evening Primrose Oil? " I started it and have gotten better ever since. In fact, between MRI #1 and MRI #2 (about 1.5 years apart), my plaques were 5 times less. Got involved with alternative things like cranio sacral therapy and eventually had my amalgams removed about 8 years ago and now doing the detox thing. My hands are still numb but that came after a hard fall to the tail in '91. After the MRI in '87 I became supersensitive to electromagnetism...a whole new can of worms.. What I wish is that a neurologist would have told me to observe what I could be allergic to as that can aggravate MS. I started LDN because I wanted help with the short term memory which could be from the plaques, mercury, menopause, or allergies (gluten?). I can't say that I have seen any major turn around yet, but my gut says to continue to take this while I do the ozone steam baths, herbs, acupuncture, etc.and try to maintain a " healthy denial " . I say that I have the diagnosis of MS, not that I have MS. Best of luck to your daughter in her " healing opportunity " in hopes that she keeps on researchin'...........MAG > > > My daughter (28) was diagnosed MS recently (early April). > On the MRI 3 considerable white spots in her spine are visible. > Her present complaints are numbness and tingling a.o in her right hand > and foot. > Otherwise she is doing well. > > I thorougly studied all i could find on LDN. > > Also i went through many user's reports..however i noticed: > Most patients have a relatively long(er) MS experience and unfortunately > many developed serious complaints (mobility, vision, bladder etc) before > starting on LDN. > Many were on CRAB drugs before. > > In my daughter's case the Neurologist probably will put pressure on her > to start using interferon. > > Unfortunately I didnot come accross many patients reports of early use > of LDN (directly after diagnosis). > Obviously I strongly prefer to start LDN rightaway.. no CRAB if > possible. > > But is this the right decision..can experienced LDN users please > advice/help me to make the right decision.. > > > fred > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2007 Report Share Posted May 21, 2007 Hi Mag, Your success with Evening Primrose Oil was really interesting to read, but I'm a little worried about your 'ozone steam baths'. Because the combination of MS and heat can result in extreme weakness, people with MS should not take hot baths. I know a hot bath is yummy, but even those who are well can get weak and sleepy from a hot bath. Unless you meant just inhaling steam (not sitting in a hot bath)? Regards, Cris > > > > > > My daughter (28) was diagnosed MS recently (early April). > > On the MRI 3 considerable white spots in her spine are visible. > > Her present complaints are numbness and tingling a.o in her right > hand > > and foot. > > Otherwise she is doing well. > > > > I thorougly studied all i could find on LDN. > > > > Also i went through many user's reports..however i noticed: > > Most patients have a relatively long(er) MS experience and > unfortunately > > many developed serious complaints (mobility, vision, bladder etc) > before > > starting on LDN. > > Many were on CRAB drugs before. > > > > In my daughter's case the Neurologist probably will put pressure > on her > > to start using interferon. > > > > Unfortunately I didnot come accross many patients reports of early > use > > of LDN (directly after diagnosis). > > Obviously I strongly prefer to start LDN rightaway.. no CRAB if > > possible. > > > > But is this the right decision..can experienced LDN users please > > advice/help me to make the right decision.. > > > > > > fred > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2007 Report Share Posted May 21, 2007 I WAS DX WITH MS IN OCT 2006 WAS ON BETASERONE IT MADE ME SICKER I THINK.STARTED LDN APRIL 2007 SO FAR SO GOOD I HOPE THIS HELPS YOU.DJ [low dose naltrexone] Re: Just diagnosed and LDN Fred, I was diagnosed 20 years ago with similar symptoms of your daughter's with funny symptoms 8 years prior (handwriting wasn't mine). My college roomate said, "Have you tried Evening Primrose Oil?" I started it and have gotten better ever since. In fact, between MRI #1 and MRI #2 (about 1.5 years apart), my plaques were 5 times less. Got involved with alternative things like cranio sacral therapy and eventually had my amalgams removed about 8 years ago and now doing the detox thing. My hands are still numb but that came after a hard fall to the tail in '91. After the MRI in '87 I became supersensitive to electromagnetism. ..a whole new can of worms.. What I wish is that a neurologist would have told me to observe what I could be allergic to as that can aggravate MS. I started LDN because I wanted help with the short term memory which could be from the plaques, mercury, menopause, or allergies (gluten?). I can't say that I have seen any major turn around yet, but my gut says to continue to take this while I do the ozone steam baths, herbs, acupuncture, etc.and try to maintain a "healthy denial". I say that I have the diagnosis of MS, not that I have MS. Best of luck to your daughter in her "healing opportunity" in hopes that she keeps on researchin'. ......... .MAG>> > My daughter (28) was diagnosed MS recently (early April).> On the MRI 3 considerable white spots in her spine are visible.> Her present complaints are numbness and tingling a.o in her right hand> and foot.> Otherwise she is doing well.> > I thorougly studied all i could find on LDN.> > Also i went through many user's reports..however i noticed:> Most patients have a relatively long(er) MS experience and unfortunately> many developed serious complaints (mobility, vision, bladder etc) before> starting on LDN.> Many were on CRAB drugs before.> > In my daughter's case the Neurologist probably will put pressure on her> to start using interferon.> > Unfortunately I didnot come accross many patients reports of early use> of LDN (directly after diagnosis).> Obviously I strongly prefer to start LDN rightaway.. no CRAB if> possible.> > But is this the right decision..can experienced LDN users please> advice/help me to make the right decision..> > > fred> The fish are biting. Get more visitors on your site using Search Marketing. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2007 Report Share Posted May 22, 2007 Hi June, Good precautionary advice, but just wondering who you're responding to? I can't recall anyone posting that they take blood thinners, but I've missed quite a few lately? Regards, Cris > > > > > > My daughter (28) was diagnosed MS recently (early April). > > On the MRI 3 considerable white spots in her spine are visible. > > Her present complaints are numbness and tingling a.o in her right > hand > > and foot. > > Otherwise she is doing well. > > > > I thorougly studied all i could find on LDN. > > > > Also i went through many user's reports..however i noticed: > > Most patients have a relatively long(er) MS experience and > unfortunately > > many developed serious complaints (mobility, vision, bladder etc) > before > > starting on LDN. > > Many were on CRAB drugs before. > > > > In my daughter's case the Neurologist probably will put pressure > on her > > to start using interferon. > > > > Unfortunately I didnot come accross many patients reports of early > use > > of LDN (directly after diagnosis). > > Obviously I strongly prefer to start LDN rightaway.. no CRAB if > > possible. > > > > But is this the right decision..can experienced LDN users please > > advice/help me to make the right decision.. > > > > > > fred > > > > > > > > > > -------------------------------------------------------------------- ---------- > The fish are biting. > Get more visitors on your site using Search Marketing. > > > > > -------------------------------------------------------------------- ---------- > > > No virus found in this incoming message. > Checked by AVG Free Edition. > Version: 7.5.467 / Virus Database: 269.7.6/813 - Release Date: 5/20/2007 7:54 AM > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2007 Report Share Posted May 22, 2007 Don KIRK, Evening Primrose Oil should not be used taking blood thinners or Coumadin for blood clots. I had a pulmonary embulism that was NOT related to my MS so I take Coumadin daily now to minimize my blood clots. Side effects of most drugs should be recomended my doctors. Parmajak [low dose naltrexone] Re: Just diagnosed and LDN Fred, I was diagnosed 20 years ago with similar symptoms of your daughter's with funny symptoms 8 years prior (handwriting wasn't mine). My college roomate said, "Have you tried Evening Primrose Oil?" I started it and have gotten better ever since. In fact, between MRI #1 and MRI #2 (about 1.5 years apart), my plaques were 5 times less. Got involved with alternative things like cranio sacral therapy and eventually had my amalgams removed about 8 years ago and now doing the detox thing. My hands are still numb but that came after a hard fall to the tail in '91. After the MRI in '87 I became supersensitive to electromagnetism. ..a whole new can of worms.. What I wish is that a neurologist would have told me to observe what I could be allergic to as that can aggravate MS. I started LDN because I wanted help with the short term memory which could be from the plaques, mercury, menopause, or allergies (gluten?). I can't say that I have seen any major turn around yet, but my gut says to continue to take this while I do the ozone steam baths, herbs, acupuncture, etc.and try to maintain a "healthy denial". I say that I have the diagnosis of MS, not that I have MS. Best of luck to your daughter in her "healing opportunity" in hopes that she keeps on researchin'. ......... .MAG>> > My daughter (28) was diagnosed MS recently (early April).> On the MRI 3 considerable white spots in her spine are visible.> Her present complaints are numbness and tingling a.o in her right hand> and foot.> Otherwise she is doing well.> > I thorougly studied all i could find on LDN.> > Also i went through many user's reports..however i noticed:> Most patients have a relatively long(er) MS experience and unfortunately> many developed serious complaints (mobility, vision, bladder etc) before> starting on LDN.> Many were on CRAB drugs before.> > In my daughter's case the Neurologist probably will put pressure on her> to start using interferon.> > Unfortunately I didnot come accross many patients reports of early use> of LDN (directly after diagnosis).> Obviously I strongly prefer to start LDN rightaway.. no CRAB if> possible.> > But is this the right decision..can experienced LDN users please> advice/help me to make the right decision..> > > fred> The fish are biting.Get more visitors on your site using Search Marketing. No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.467 / Virus Database: 269.7.6/813 - Release Date: 5/20/2007 7:54 AM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2007 Report Share Posted May 22, 2007 I am a Grandmother & have had MS for least 25 years and I walk with a cane for short distances and a rolling walker for a mile or more. I keep mentally busy on the computer as well as making many pieces in Art in various mediums, and live in Parma, Ohio, I exercise 3 times a week in water. I was looking at the warning on the Evening Primrose Oil label "consult with a doctor before using , includes blood thinners or daily aspirin, if you have or had a bleeding disorder, or if you plan to have or had recent surgery. Discontinue use if any adverse reactions occur. I think it was Don Kirk that mentioned Evening Primrose Oil, but I could be mistaken because I don't keep records great. IS Evening Primrose Oil (omega 6?) a Blood thinner???? I don't take it! I do take Flax Oil (Omega 3) with vitamins and Avonex. Does ANYONE keep track of how many of us have MS and where they are located? On my short street 1/8 of a mile, four women have MS and a fifth girl moved this year. I know that is unusual, who is resposible for keeping records? Parmajak1@... [low dose naltrexone] Re: Just diagnosed and LDN Hi June,Good precautionary advice, but just wondering who you're responding to?I can't recall anyone posting that they take blood thinners, but I've missed quite a few lately?Regards,Cris> >> > > > My daughter (28) was diagnosed MS recently (early April).> > On the MRI 3 considerable white spots in her spine are visible.> > Her present complaints are numbness and tingling a.o in her right > hand> > and foot.> > Otherwise she is doing well.> > > > I thorougly studied all i could find on LDN.> > > > Also i went through many user's reports..however i noticed:> > Most patients have a relatively long(er) MS experience and > unfortunately> > many developed serious complaints (mobility, vision, bladder etc) > before> > starting on LDN.> > Many were on CRAB drugs before.> > > > In my daughter's case the Neurologist probably will put pressure > on her> > to start using interferon.> > > > Unfortunately I didnot come accross many patients reports of early > use> > of LDN (directly after diagnosis).> > Obviously I strongly prefer to start LDN rightaway.. no CRAB if> > possible.> > > > But is this the right decision..can experienced LDN users please> > advice/help me to make the right decision..> > > > > > fred> >> > > > > > > > --------------------------------------------------------------------> The fish are biting.> Get more visitors on your site using Search Marketing.> > > > > --------------------------------------------------------------------> > > No virus found in this incoming message.> Checked by AVG Free Edition. > Version: 7.5.467 / Virus Database: 269.7.6/813 - Release Date: 5/20/2007 7:54 AM> No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.467 / Virus Database: 269.7.6/813 - Release Date: 5/20/2007 7:54 AM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2007 Report Share Posted May 23, 2007 PARMAJAK ,HI I DIDN'T POST ABOUT BLOOD THINNERS OR EVENING PRIMROSE. I DONT TAKE EITHER. MUST HAVE MIXED ME UP WITH SOMEONEELSE THANKS.DON KRK]DJ [low dose naltrexone] Re: Just diagnosed and LDN Fred, I was diagnosed 20 years ago with similar symptoms of your daughter's with funny symptoms 8 years prior (handwriting wasn't mine). My college roomate said, "Have you tried Evening Primrose Oil?" I started it and have gotten better ever since. In fact, between MRI #1 and MRI #2 (about 1.5 years apart), my plaques were 5 times less. Got involved with alternative things like cranio sacral therapy and eventually had my amalgams removed about 8 years ago and now doing the detox thing. My hands are still numb but that came after a hard fall to the tail in '91. After the MRI in '87 I became supersensitive to electromagnetism. ..a whole new can of worms.. What I wish is that a neurologist would have told me to observe what I could be allergic to as that can aggravate MS. I started LDN because I wanted help with the short term memory which could be from the plaques, mercury, menopause, or allergies (gluten?). I can't say that I have seen any major turn around yet, but my gut says to continue to take this while I do the ozone steam baths, herbs, acupuncture, etc.and try to maintain a "healthy denial". I say that I have the diagnosis of MS, not that I have MS. Best of luck to your daughter in her "healing opportunity" in hopes that she keeps on researchin'. ......... .MAG>> > My daughter (28) was diagnosed MS recently (early April).> On the MRI 3 considerable white spots in her spine are visible.> Her present complaints are numbness and tingling a.o in her right hand> and foot.> Otherwise she is doing well.> > I thorougly studied all i could find on LDN.> > Also i went through many user's reports..however i noticed:> Most patients have a relatively long(er) MS experience and unfortunately> many developed serious complaints (mobility, vision, bladder etc) before> starting on LDN.> Many were on CRAB drugs before.> > In my daughter's case the Neurologist probably will put pressure on her> to start using interferon.> > Unfortunately I didnot come accross many patients reports of early use> of LDN (directly after diagnosis).> Obviously I strongly prefer to start LDN rightaway.. no CRAB if> possible.> > But is this the right decision..can experienced LDN users please> advice/help me to make the right decision..> > > fred> The fish are biting.Get more visitors on your site using Search Marketing. No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.467 / Virus Database: 269.7.6/813 - Release Date: 5/20/2007 7:54 AM You snooze, you lose. Get messages ASAP with AutoCheck in the all-new Beta. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2008 Report Share Posted May 3, 2008 Hi Marcie,Skip and I decided to go ahead with the MRI study.Would you mind submitting your results. We are hoping to have the followingif possible.A questionnaire:When were you diagnosed with MS?When did you start LDN?Did you have any MRI's prior to starting LDN?When and what were the results?What were your symptoms?Have you had any MRI's after starting LDN?When and what were the results?Where there any changes in your symptoms?If possible, would you be able to send copies of the MRI reports and/or theMRI's themselves?Address to send them to: (I can pay for the mailing fee if you need me to).Aletha Wittmann9722 Bluestem PathSalinas, CA 93907831-632-2421orSkips Pharmacy21000 Boca Rio Rd # A29Boca Raton, FL 33433(561) 218-0111 Re: [low dose naltrexone] Just diagnosed and LDN Fred, After diagnosis in Jan. '96, I used Avonex for 2 years. By that time, Nov '99, I couldn't stand or walk at all. I just wish that I had known about LDN then. The neuro only told me about traditional meds but didn't guarantee that they would help. At that point I was SO desperate that I would have tried anything. I started LDN Nov. '03. I still can't stand or walk, but my MRIs from one month ago, 1 1/2 years ago and '99 show no difference. Neuro told me that he really expected my MRIs to be much worse given my symptoms. Go figure??? If I were in your daughter's place, I'd get on LDN ASAP!!! And only LDN. JMHO. Marcie fdenys <f.denyshccnet (DOT) nl> wrote: My daughter (28) was diagnosed MS recently (early April).On the MRI 3 considerable white spots in her spine are visible.Her present complaints are numbness and tingling a.o in her right handand foot.Otherwise she is doing well.I thorougly studied all i could find on LDN.Also i went through many user's reports..however i noticed:Most patients have a relatively long(er) MS experience and unfortunatelymany developed serious complaints (mobility, vision, bladder etc) beforestarting on LDN.Many were on CRAB drugs before.In my daughter's case the Neurologist probably will put pressure on herto start using interferon.Unfortunately I didnot come accross many patients reports of early useof LDN (directly after diagnosis).Obviously I strongly prefer to start LDN rightaway.. no CRAB ifpossible.But is this the right decision..can experienced LDN users pleaseadvice/help me to make the right decision..fred Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2008 Report Share Posted May 3, 2008 A questionnaire:When were you diagnosed with MS? 2003When did you start LDN? March 1, 2008Did you have any MRI's prior to starting LDN? YesWhen and what were the results? Strong Memorial Hospital, Rochester, NYWhat were your symptoms? Double vision, Left footdrop, fatigue,ataxia.Have you had any MRI's after starting LDN? NoWhen and what were the results?Were there any changes in your symptoms? Less fatigueIf possible, would you be able to send copies of the MRI reports and/or theMRI's themselves? Next time I have one I will if you still want them. It probably won't be for 6 mo. or more since I had one about 6 mo. ago.Betty. Be a better friend, newshound, and know-it-all with Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
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