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LDN is AMAZING!

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    LDN is AMAZING!

    I've been on LDN for 5 months now and I had my follow-up MRI on tuesday. Just got a call from my neuro and his words were "Rock Solid Stable!"

    Don't get me wrong LDN is no miracle drug, I still have many ups and downs but I couldn't be happier with this treatment.

    Almost my 1 year dx anniversary and I finally feel that there is hope of being me. I know that I will never be "the old me" again but I can deal with this!
    Love, Laugh, Live...in this order
    Dx'd 2-24-11 - Baclofen 60 mg/day 5-11, LDN 4.5 mg/day 9-24-11, Cymbalta 60mg/day for pain 11-11

    #2
    Congratulations! Anything that gives us something to be happy or upbeat about it is worth celebrating!

    dumb question though, what is LDN??
    Prob MS 9-14-04; Dx PPMS 9-16-11; RRMS 12-15-11
    Ampyra 10mg 2xday
    Copaxone 1/20/12

    Comment


      #3
      not dumb

      I was going to ask the same question. I want to take it t no the NP on the 30th. Any new relief, I looking forward to it.

      Comment


        #4
        JBell,
        LDN is low-dose Naltrexone. If you look up in the sticky notes there is a description posted by knuckle on LDN. It's in this forum.

        It's a generic drug that works with your immune system. It's a pill that you take at bedtime and it boosts your bodies endorphin levels and regulates your immune system.

        I think the sticky note is useful ldn information.
        Love, Laugh, Live...in this order
        Dx'd 2-24-11 - Baclofen 60 mg/day 5-11, LDN 4.5 mg/day 9-24-11, Cymbalta 60mg/day for pain 11-11

        Comment


          #5
          http://www.lowdosenaltrexone.org/

          I was on it 5 years ago, it helped my bladder frequency but I had to stop it as it cause me severe insomnia though people often sleep better on it, go figure.

          Comment


            #6
            Well, I see MS World has taken down my sticky. Maybe a moderator can explain why.

            Until then, here's another website on LDN:

            www.LDNaware.org

            Comment


              #7
              Thats great news inmoni5!

              I was dx'd in July 09. I initially started on Copaxone, but didnt tolerate that very well. I then decided to take part in a drug trial called the 'Tower Study' which is testing the efficacy of an oral drug called Teriflunomide. The drug company running the trial, Sanofi-Aventis, removed me from the trial due to side effects: 17% decrease in lung function over two years.

              So now I am looking into another treatment, and I'm considering LDN. LDN isnt big here in Australia, so I am going to have to use what data is available, and persuade my neuro to let me try it. Luckily, she is pretty open minded, so she might let me give it a go.

              Glad that you have found a treatment that is working for you
              Diagnosed July 1st 2009 ~ RRMS

              They're not brain lesions...they're bight ideas

              Comment


                #8
                There,

                I've heard alot of people having issues sleeping on LDN. However, I seem to be one of the lucky ones and it makes me sleep wonderfully! Did you ever try daytime dosing?

                To everyone else,

                I think that LDN is like any other drug out there. It works for some people and others it doesn't. Just like all the CRAB drugs as well...some work for certain individuals and some don't.

                The funny thing about ms is that each case is individual therefore it must be treated individually.

                Sneakypuss,

                There are also phone docs that will prescribe ldn as well if you are not successful. My neuro is open minded as well and thought that a 6 month trial w/ldn wouldn't hurt. Sometimes if you go about it, that you want to "try" it, they will go with you. Good luck!!
                Love, Laugh, Live...in this order
                Dx'd 2-24-11 - Baclofen 60 mg/day 5-11, LDN 4.5 mg/day 9-24-11, Cymbalta 60mg/day for pain 11-11

                Comment


                  #9
                  My local neuro will not prescribe LDN and my appointment with the doc who might is not until end of April. Does anyone here have the list of docs that will do the telephone consults that you can email? Thanks!!

                  Robin

                  Comment


                    #10
                    Originally posted by RSpradlin View Post
                    My local neuro will not prescribe LDN and my appointment with the doc who might is not until end of April. Does anyone here have the list of docs that will do the telephone consults that you can email? Thanks!!

                    Robin
                    I personally do not. However, if you are on Facebook there is a closed group that has all the info you are looking for you just have to ask. It's called Got Endorphins, click "like" and they will add you to the group. I wish you the best of luck!!
                    Love, Laugh, Live...in this order
                    Dx'd 2-24-11 - Baclofen 60 mg/day 5-11, LDN 4.5 mg/day 9-24-11, Cymbalta 60mg/day for pain 11-11

                    Comment


                      #11
                      I'm so happy that LDN is doing so well for you.My DW has been on it for about 2 years now for her MS Dementia and this is the ONLY thing out there that has shown any promise in halting this.

                      I see that some people posting have had trouble sleeping with this. Let me interject something we discovered. DW started on LDN 3.0 after about a year, it was doing all we expected MRI's showed no change, all progression had halted. We started with a new Dr. who was easier to see then the first one and he offered to up the strength if we wanted to 4.5. We took it thinking work on her even better. After about 5 months she was having sleeping, waking up every night about 3:00AM. After going through this for about 3 months, we called the DR. and asked him to write a new RX for 3.0. Filled it and within 72 hrs things were back to "normal"

                      I am a "retired" Pharmacy "tech", and had forgotten that all drugs may need adjusting, one "size" does NOT fit all. 4.5 was too strong, 3.0 works just fine, if you can't handle 3.0 then try 1.5 and see if that helps.

                      To me this drug is a "godsend" and I support anyone who wants to try this.

                      Good luck to all.

                      Comment


                        #12
                        That is awesome news Imoni!! I too am doing very well on LDN. I won't have an MRI until June to see how things are doing on the inside, but honestly it doesn't matter to me.

                        I feel great and know the LDN is working for me as well. It truly amazes me that Dr.s are ignorant about it, or flat out won't Rx it.

                        I'm up to 4.5 and my body seems to have adjusted well to the higher dose.

                        My prayer is that after 20 years of this awful disease God maintains my level of mobility and LDN keeps working to get my immune system back in order.
                        Opiegirl, Dx 1991
                        Have never used DMD's.

                        LDN 9/2011-9/2012 & just started again 6/14
                        Estriol 9/12-present
                        Still Hopeful.

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