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    #76
    Can someone please explain the link rules here? I see some people's links removed by moderators, and then others left in. I've read the FAQs and all, but still haven't a clue. Is it a user's permissions thing, or...?
    This Information can be found in our Guidelines:

    6. URLs or Websites:. MSWorld allows posting URLs or websites addresses of reputable sources, that are related to Multiple Sclerosis. Posting personal websites /URLs is not allowed. These may be put in your profile, or set as your MSWorld homepage. (See Guideline #2 concerning Member's Profile.)

    If something is questionable, it is left up to an Administrator to decide.
    Kimba

    “When you change the way you look at things, the things you look at change.” ― Max Planck

    Comment


      #77
      LDN Conference live streamed Nov 7th & 8th next Friday and Sat. Dr. Chopra will be available on the 7th after 10am on live chat, or you can submit questions anytime before if you sign-up for the live feed, J-Bo.

      The cost is $25 for the two-day live stream. Outstanding doctors will be incredibly informative based on previous conferences.

      LDN Research Trust can be Googled. Then just click on “Conference” for the 2014 brochure. Scroll down to “the conference will be live streaming around the world”, price for two days = $25, under that click “Book Here” if interested.

      On Friday the first day, Nov 7th some of the speakers are:

      Dr. Pradeep Chopra will present at 9:10am on the mechanism of LDN
      Dr. Samyadev Datta – LDN in Pain Management
      Dr. Mark Shukman – LDN in Physiatry (physical med & rehab)
      Dr. Kent Holtorf – Chronic Fatigue Syndrome and Fibromyalgia
      Dr. Armin Schwarzbach – Lyme Disease
      Q & A at the end of the day is always informative.

      On Sat the second day, Nov 8th some of the speakers are:

      Stephen Dickson – The Pharmacology of LDN
      Dr. Denna Windham – LDN in clinical practice
      Dr. Philip Boyle – LDN in fertility
      Professor Angus Dalgleish – LDN Research and Clinical Trials
      Dr Mark Mandel
      Q & A

      There are a few more speakers than I listed.

      Drs. Windham and Boyle are dynamite, IMO. Virtually all of these doctors will talk about patients under their care and specific treatment using LDN.

      I am so appreciative notable doctors take time to present about the use of LDN in their respective practices.

      I appreciate Linda Elsegood from LDN Research Trust, a delightful lady who has MS but organized another important conference for everyone with MS and others, too.

      Anyone considering LDN will find this live stream incredibly informative, I’m certain.

      Unfortunately, LDN doesn't have pharma, or big money behind it. A conference like this is sponsored by everyday people. The live stream costs $25 to pay travel expenses and conference costs; not anyone's salary, doctor or organizer.

      Big Pharma's posh MS conference in Boston last month sponsored around 7,000 attendees from all over the world. Quite an extravagant affair said some I know who attended. 1,700 abstracts were presented. I just entered "LDN" in the search box of abstracts for that conference and it came back "no results".

      No interest? Marvelous, indeed. You would think someone would want to prove LDN has no value in MS. Wonder why they don't?

      I believe everyone understands there is no one else to pay for LDN conference costs but everyday people.

      The 2014 conference presents opportunity for us to access doctors who study and use LDN in their respective practices. Last year I attended and I was amazed, truly amazed.

      Best

      Comment


        #78
        Thanks, Kimba. Don't know how I missed that, but I understand now.

        And Myoak, I know what I'll be doing this Friday and Saturday! Sounds like the fee will be money well spent! And seems likely that we will have lots to talk about. Thanks again for sharing all of this info here.
        PPMS
        Dx 07/13

        Comment


          #79
          Oh no! When I follow the "book here" link for streaming, it says "product not available." Maybe they have a limit to the number of people streaming for technical reasons.

          I see on that same Live Streaming page that it says one of the things included is "Receive access a full recording of the conference after the event" so I wonder if they will make that available for purchase after the conference. I hope so!
          PPMS
          Dx 07/13

          Comment


            #80
            Hi J-Bo,

            Here is the response I received from Linda Elsegood at LDN Research Trust:

            “Registration has closed for the conference. I can however override this by doing it manually. Anyone wishing to register either in person or for the Live Stream, they have to email me and I will send a PayPal invoice. Once I have received payment they will receive details how to login etc on Wednesday.”

            You can email

            I hope this will help anyone interested. I’m sure some type of conference video will be made available sometime after the conference. Perhaps, on Youtube, a DVD, or download. I’ll post when I find out.

            **Email address removed by Moderator in compliance with MSWorld Guidelines. This may be put in your Profile for all registered, logged-in members to see. Go to UserCP > Edit Details**

            Comment


              #81
              Post- Conference Info:

              “The individual presentations will be available online after the conference once they have been edited and uploaded, those registered for the Live Stream will receive a code to view for free. Those not registered for the Live Stream will be charged $25.”

              I should mention that no one at LDN Research Trust gets paid, they are all volunteers. It would be impossible to assemble doctors at a conference unless there was some way of paying costs.

              Linda Elsegood is a volunteer at LDN Research Trust. By contrast, Joyce Nelson at the NMSS was paid $462,925 in 2009 according to Forbes Magazine:

              The NMSS has a different director today, but I have no idea what the top pay is at the NMSS, currently. They don’t seem to be very public about it, Google search doesn’t turn up much about it.

              Best

              **URL removed by Moderator in compliance with MSWorld Guidelines. This may be put in your Profile for all registered, logged-in members to see. Go to UserCP > Edit Details**

              Comment


                #82
                Sorry the links were shot down but you can use Google to find the information almost as quickly as the links.

                Linda Elsegood can be emailed form the LDN Research Trust site. Just Google LDN Research Trust and look for “contact”.

                Also, for the reference to NMSS pay, Google this phrase…. “National Multiple Sclerosis Society – Forbes top pay Nov 17, 2010”. The $462,925 figure appears just below the Google link.

                Seasha, best to you, I appreciate the job you are doing as moderator. I don’t always agree but you are a terrific mod working within the confines of certain rules. Thank you so much for the selfless giving of your time for the betterment of MSers and caregivers. You are appreciated by so many.

                Best

                Comment


                  #83
                  Thanks, Myoak!

                  I have a very long-running catch-22 with Paypal, unfortunately. I forgot my password many years ago, but when I try to do the "forgot your password?" it only offers me contact by phone in the drop-down list, not email, and the phone number it has listed is wrong and won't let me change it. Sigh. I guess I could try creating a new account and give them a new gmail address but don't know if they'll let me do it with the same name.

                  I'll try to contact Linda and see if there's any way I could send her a check by snail mail. If not, I'll give it another go in Paypal hell.
                  PPMS
                  Dx 07/13

                  Comment


                    #84
                    Originally posted by Myoak View Post
                    Thank you so much for the selfless giving of your time for the betterment of MSers and caregivers. You are appreciated by so many.

                    Best
                    You're welcome Myoak and I can say the same to you as well! People do search out your spot on posts
                    1st sx '89 Dx '99 w/RRMS - SP since 2010
                    Administrator Message Boards/Moderator

                    Comment


                      #85
                      Hope those interested in the LDN Conference will be soon be able to access the information shared. LDN Research Trust is the place to start.

                      Claudia Christian made a dynamite presentation at the end of the conference. She is an actress many will be familiar with, I'm sure.

                      Although she didn't talk much about low dose naltrexone she was emphatic about the use of naltrexone for alcoholism based on her personal experience.

                      The method she described is called the Sinclair Method in which 50 mg of naltrexone is taken 1 hour before drinking. One hour allows the body enough time to absorb the naltrexone and block opioid receptors.

                      Claudia said the first time she took Naltrexone and poured herself a glass of wine that she drank half a glass and had no desire to drink more. For her, an alcoholic, that experience changed her life. Naltrexone tamed the disease which was destroying her life.

                      She said that alcoholics who want to overcome the addiction carry a Naltrexone pill and take it one hour before drinking. She stated that 78% of those who do so wean themselves off alcohol. By comparison, other programs often have a 9% to 10% success rate.

                      You can Google "cthreefoundation" dot org to find more information, if you have a loved one or know someone wanting to overcome alcohol addiction.

                      This post is related to low dose naltrexone because the FDA approved a safe dose of 50mg naltrexone for alcoholism back in 1994.

                      The FDA approved a safe dose of 50 mg; therefore, we can rest assured that lower doses commonly taken at 3mg to 4.5mg are exceedingly safe being less than 1/10th the FDA dose.

                      Ms. Christian said that naltrexone is sold over the counter in South America.

                      Lastly, I must add the sincerity and integrity of Claudia Christian are quite evident. This lady is bold about what helped her and is giving a great deal of her life to share that help with others.

                      She tried every method under the sun to overcome her addiction to alcohol; only naltrexone worked.

                      I hope anyone interested will Google the cthreefoundation.

                      Best

                      Comment


                        #86
                        Thanks for the report, Myoak. That’s a wonderful story about Ms. Christian! I’m sure there are tons of people who would be/are against it because it’s too easy. No hard work and suffering involved so it must be bad. And of course it threatens our billion-dollar recovery industry with their dismal record of failure.

                        I haven’t gotten around to finding out how I can get the recorded web casts, but today I’m feeling so crestfallen that it hardly seems worth it. As it turns out, the tip I had about the doctor who was supposedly open to prescribing LDN is false. He prescribes full dose Naltrexone for alcohol and drug addiction, but has no knowledge of LDN and would not prescribe it for me. He told me I should just go back to my pain management doctor and ask for stronger opioids. I had such high hopes that I might be seeing a way out of all this intractable pain soon, but instead I’m back to square one again.

                        I don’t understand how a society that is currently on a witch hunt against opioid painkillers can flat out refuse to offer any viable alternatives. I have been through it all—Gabapentin, Lyrica, Cymbalta, Carbamazepine, Topamax, Effexor, Tramadol, Vicodin, Methadone, and on and on in (literally) mind-numbing combinations and who knows at what medical risks. Even tried a spinal cord stimulator out of desperation. I felt like this was my last hope, a safe and inexpensive substance, and every doctor I’ve asked just casually dismisses it because, why, exactly? I know, do no harm, but what is the harm here?

                        Next to premature death, isn’t relieving pain and suffering supposed to be their main purpose? If not, what is the point of them? If pain isn’t so bad, why is torture a war crime? I just don’t understand why doctors almost seem to regard it as a secondary or even tertiary concern. Can someone explain this to me?

                        Sorry for the rant. It’s just been a hard day. I will of course pick myself up tomorrow and fight on. As always, thanks for listening.
                        PPMS
                        Dx 07/13

                        Comment


                          #87
                          Hi J-Bo,

                          You or anyone interested could get info on how to access the 2014 LDN Conference presentations by Googling "LDN Research Trust". I'm sure from there you can email the contact, Linda Elsegood, with any questions.

                          J-Bo, not a rant at all! I believe I understand. Don't give up!
                          To me, industry neuros sometimes are the ones who behave like quacks; those who bury their heads in the sand and refuse to educate themselves about LDN even though doing so might greatly relieve suffering. Believe me, if they were suffering personally they would have a whole new attitude about what they were willing to learn. Willful ignorance just does not impress me.

                          J-Bo, if you or anyone would like to contact me regarding LDN (or any matter) I just added an email address in my profile. I can say more privately than allowed here, obviously.

                          Where there is a will there is a way, J-Bo.

                          Comment


                            #88
                            Myoak, you have the patience of a saint, and I want to thank you for that!

                            Anyway, I filled in the contact form on the LDN Research Trust site and asked them about obtaining the recordings of the webcast because I kept going back there and couldn’t find any links there, just the old one for live streaming. Maybe they will get back to me soon.

                            I understand that there are a zillion wild claims out there of cures for just about anything, and doctors have to operate on science and fact, but it seems to me that when dismissing options, they do so selectively. They prescribe meds for off-label reasons all the time, and those don’t have the backing of the FDA either. And willful ignorance, as you say, is inexplicable. My doctor is supposedly an MS specialist. This is what he deals with every day, and you’d think he’d get tired of telling people “I’m sorry, there’s nothing else I can do for you.” How can anyone just give up without at least trying something so demonstrably safe? I could see if it were risky, but this…well, I just don’t get it.

                            As for other concerns, I will take your advice and contact you directly. Thank you so much!
                            PPMS
                            Dx 07/13

                            Comment


                              #89
                              LDN update

                              Well, started LDN 10th October and amazed how quickly I felt results. No cane since 18th October - wow!

                              I have limped for 5 years now and could not lift left foot off ground without physically lifting my leg. Can step in the tub or shower without feeling like it is an accident waiting to happen.

                              Now I am not limping and can actually lift my foot off the ground unaided at least 1ft. Also have noticed much less spasciscity - bonus.

                              This feels so amazing to me and continually want to go out just for that feeling - FREEDOM. Feel a bit like a kid in a candy store right now.

                              Was due to also start Famprya but have been advised by MS clinic and physio to hold off for now as things are going so well with the LDN.

                              I do have odd doubt about how long this might last, but for now all is good and just want to make the most of it and hope, hope that it continues.

                              Such amazing results for a much less toxic drug and lower cost that we are all so conscious about when there are other costs involved with MS.
                              Gubbins

                              Comment


                                #90
                                Gubbins, that is great news - so happy to hear that you are doing well on LDN! I've been on it for two years and I have to say I have been doing really well. Two years ago I felt I was transitioning from RRRMS too SPMS and I don't feel that way now.

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