Announcement

Collapse
No announcement yet.

Both 4-AP and stem cell treatment target demyelinated axons for better CNS conduction

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    #16
    For those interested that haven't seen it. This study is currently recruiting participants.Verified December 2016 by Kessler Foundation - Looks like it's in New Jersey
    https://clinicaltrials.gov/ct2/show/...ank=1#contacts

    Experimental: Locomotor Training + Dalfampridine Subjects randomized to this group will undergo 10 weeks of double-blind treatment with extended release dalfampridine tablets (10 mg twice daily) while simultaneously receiving locomotor training therapy (5 sessions per week x 10 weeks = 50 sessions total).


    Drug: Dalfampridine Dalfampridine 10 mg tablet, twice-daily, for 10 weeks
    Other Names:
    • Ampyra
    • Fampridine Sustained Release (Fampridine-SR)
    • 4-Aminopyridine (4-AP)

    Comment


      #17
      It boggles the mind why 4-AP isn't part of the standard pharmaceutical arsenal to deal with SCI along with Baclofen and Lyrica/gabapentin. It's action targetting the source of the problem whereas these other medications simply deal with spasticity symptoms.

      It also boggles the mind why Fampyra is so expensive, given the active ingredient was used as a cheap bird repellent (a greedy bird eats it, starts getting electrical shock symptoms, flock sees it and gets out of there).

      It also boggles the mind why ppl are getting experimental stem cell implantation in China/Panama for > US$25k without trying this first to see remyelination potential they may get.

      Some great recent references posted on the usefulness of 4-AP for SCI too. Thank you. It took them decades to figure it out.
      Last edited by Pauly1; 28 Dec 2016, 10:25 PM.

      Comment


        #18
        I agree with you on some of this. Having been on and tried most any med out there, I think 4-ap should be a go to before most of the others. The rest you listed are much worse and do little in my experience.

        That said, I think you will be very hard pressed to find someone with a spinal cord injury that has done the amount of rehab I have and currently do. I've found that yes 4-ap helps, but it is slow for remyelination, VERY slow.

        On the why people go for stem cell, I totally get it. I went to Germany to X-Cell and I went because I felt I had exhausted every option out there. I was lucky enough (I hate that word) that in my rehab I had almost an unlimited budget. I've seen almost every major neurologist, researcher etc in the US at one time or another. And I grew tired of hearing a cure is coming in a year or two, I am 13.5 years post injury and have heard a cure is coming next year that long. For me, I took peace of mind knowing that I'd tried everything out there. I was willing to risk getting worse in an effort to get better.

        Comment


          #19
          Does anyone knows any other supplier for 4-AP-3-MeOH than mod4all.
          If not, mod4all looks as only 4-AP-3-MeOH supplier in the world... and that's scarry.
          www.MiracleofWalk.com

          Miracles are not contrary to nature, but only contrary
          to what we know about nature
          Saint Augustine

          Comment


            #20
            Originally posted by comad View Post
            If not, mod4all looks as only 4-AP-3-MeOH supplier in the world... and that's scarry.
            I've read that it's actually manufactured in the US by Alfa Asear and then sent to whatever compounding pharmacies order it and then they put in the additional fillers and dispense.
            http://spinalcordresearchandadvocacy.wordpress.com/

            Comment


              #21
              Originally posted by matt414 View Post
              I agree with you on some of this. Having been on and tried most any med out there, I think 4-ap should be a go to before most of the others. The rest you listed are much worse and do little in my experience.

              That said, I think you will be very hard pressed to find someone with a spinal cord injury that has done the amount of rehab I have and currently do. I've found that yes 4-ap helps, but it is slow for remyelination, VERY slow.

              On the why people go for stem cell, I totally get it. I went to Germany to X-Cell and I went because I felt I had exhausted every option out there. I was lucky enough (I hate that word) that in my rehab I had almost an unlimited budget. I've seen almost every major neurologist, researcher etc in the US at one time or another. And I grew tired of hearing a cure is coming in a year or two, I am 13.5 years post injury and have heard a cure is coming next year that long. For me, I took peace of mind knowing that I'd tried everything out there. I was willing to risk getting worse in an effort to get better.

              So it would be great to have a summary of what provided benefits and what did not...
              T3 complete since Sept 2015.

              Comment


                #22
                where did you purchase it from?

                Originally posted by FellowHawkeye View Post
                Pauly, I'm so glad the 4-AP is helping you so much! I ordered the 4-AP-3-MeOH, but it had quality filler upping price and it doesn't help me or others according to mod4all and so am waiting for delivery of it w/o filler, which is what helped me a lot before. Little needed to really help me and I'm a C3/4 incomplete similar to you. -Jan
                Hawkeye-where did you purchase it from?

                Comment


                  #23
                  The capsules from mod4all are 0.5mg 4-AP-3-MeOH, with 10mg of L-Threonine

                  I couldn't find anything about L-threonine on here but here is what wiki says

                  Threonine is used to treat various nervous system disorders including spinal spasticity, multiple sclerosis, familial spastic paraparesis, and amyotrophic lateral sclerosis (ALS, Lou Gehrig's disease).

                  c6 inc since 2-19-11
                  ex pro-am motocross racer
                  tilite aero z s2

                  Comment


                    #24
                    Originally posted by Mize View Post
                    So it would be great to have a summary of what provided benefits and what did not...
                    Send me an email. mattbigos @ earthlink.net

                    Comment


                      #25
                      Originally posted by grammy View Post
                      i've read that it's actually manufactured in the us by alfa asear and then sent to whatever compounding pharmacies order it and then they put in the additional fillers and dispense.
                      thanks grammy!!!!
                      www.MiracleofWalk.com

                      Miracles are not contrary to nature, but only contrary
                      to what we know about nature
                      Saint Augustine

                      Comment


                        #26
                        Originally posted by matt414 View Post
                        I've found that yes 4-ap helps, but it is slow for remyelination, VERY slow.
                        So we have the following accessible treatments/procedures for remyelination:

                        1. Stem cells - permanent fix within days of implantation:

                        * Asterias' AST-OPC1 stem cells: still in clinical trials
                        * Neural stem cells in China: US$27.5k Puhua or US$25k wumedical if have lots of money.
                        * Umbilical cord stem cells: US$30k in Panama

                        2. Leuprolide acetate (Lupron/Leupride depot 3.75mg x3 months) gonatropin. Approx 3 months to supposedly cause permanent changes. Still in clinical trials.
                        Cost? US$300 for medication.

                        3. 4-ap or 4AP-3-MeOH. ~2 hr window of operation + very slow remyelination effect.
                        Cost? US$30 or US$100 for 100 caps respectively


                        I'll be self trialling the Leupride Depot approach over the next few months. It offers the best price/recovery ratio.



                        Last edited by Pauly1; 2 Jan 2017, 7:39 AM.

                        Comment


                          #27
                          Originally posted by matt414 View Post
                          Send me an email. mattbigos @ earthlink.net
                          Nothing publicly documented and accessible to help the ones in most need of such guidance?

                          Comment


                            #28
                            Originally posted by matt414 View Post
                            Send me an email. mattbigos @ earthlink.net
                            Sent
                            T3 complete since Sept 2015.

                            Comment


                              #29
                              From mo4all.com. A new website's going up today, I think, so I'll have more info for you soon. Holidays delayed my new shipment. Won't have filler that I know of but be equivalent to 10mg 4AP...Jan

                              Comment


                                #30
                                Does anyone know if 4-ap could potentially help someone who had a spinal cord stroke; C2-t2 infarction? I'm full time walking. My quality of life issues are bladder and bowel, which I'm wondering if it might help. I've been reading about it on here for the last 10 years, but I've never understood if I would be a good candidate. - thanks

                                Comment

                                Working...
                                X