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    4AP

    Anyone here using or has used 4AP?

    I just got my first shipment and am curious as to other people's results. I am a T4 motor complete, sensory incomplete.
    "Oh yeah life goes on
    Long after the thrill of livin is gone"

    John Cougar Mellencamp

    #2
    4ap

    Yes I used it for about 2 months.I didn't get the results I expected,maybe I didn't give it enough time.For you it might do wonders.Good luck.

    Comment


      #3
      Hi

      I used it for 2 months and no result on me [img]/forum/images/smilies/frown.gif[/img]
      side effect on me: a bit dizzy at the end of the 2 months.
      But we are all different. You have to try to know exactly...

      Good luck

      Steve

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        #4
        I am a t2 -3 incomplete and used it for 2 months and it didn't do anything for me.

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          #5
          ? Dr. Young

          Do you think that 4AP might be more affective to someone who is having this nerve procedure (i.e. Kao, Cheng)?

          Comment


            #6
            4AP & nerve procedure

            Birde: I am planning on trying the 4AP for a few weeks now and then again after I have Dr. Cheng's procedure. I think it will be interesting to see what happens.

            I am unclear as to how long I should take it for before I feel any effects (if it works at all).

            ciao
            "Oh yeah life goes on
            Long after the thrill of livin is gone"

            John Cougar Mellencamp

            Comment


              #7
              Birde

              I don't know the answer to your question. If the 4-AP is given within the parameters that we have discusssed before, it should be reasonably safe. There is, however, very limited experience with the effect of 4AP on axonal growth and early axonal function in the spinal cord. Harry Goldsmith and his colleagues at one point did claim that 4-AP stimulates regeneration in the spinal cord but that data is not yet convincing. Wise.

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                #8
                I've tried it for about eight weeks. The only noticeable difference was that my spasms increased and some numbness in my hands. And I don' tknow if this is directly related, but I gained about 20 lbs. This was a good thing becuase I lost about 50 lbs after I got hurt and had not been able to get it back in 2 years.

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                  #9
                  To tell you the truth, I´ve yet to read a story from someone with a spinal cord injury who has truly benefited from 4-AP. Anybody out there care to show me wrong?
                  "So I have stayed as I am, without regret, seperated from the normal human condition." Guy Sajer

                  Comment


                    #10
                    I am T6 incomplete and have tried it for 6-7 weeks and I didn't noticed any difference.I had ordered it for someone else as well and he had a slightly improvement of feeling but his cord looked undamaged on a MRI-scan so it's quite possible that he had a lot of demyelinated axons.

                    Comment


                      #11
                      4AP side effects?

                      Anyone have any 4AP side effects while taking it?
                      I'm not too concerned but one of my big fears is upset stomach.

                      Also would it interract at all with Ditropan, Alcohol or Marijuana?
                      "Oh yeah life goes on
                      Long after the thrill of livin is gone"

                      John Cougar Mellencamp

                      Comment


                        #12
                        Side effects

                        for the first week or so, it really screwed up my bowel program. But I think I started out using too much. I was using the 10 mg capsules to start with which was a lot for me. After I've backed off to the 5 mg capsules, things were much better.

                        Comment


                          #13
                          I've been taking 4-AP, the compounded formula, since early 1998 after showing benefits from it during a phase 2a clinical trial of it in late 1997. I have to take it with food otherwise I get mega heartburn. No upset stomach though. I don't know about its interaction with pot. I occassionally have aglass or two of wine without figuring out when my last dose was and have yet to have that bother me. It is supposed to be an antaganist for 4-AP though...Wise? No problems with taking 4-AP and ditropan. LOL Trust me!

                          4-AP or 4-aminopyridine is a potassium channel blocker that helps messages from the brain jump demylinated or dysmyleinated axons. It has helped me in many ways and some has come after taking it or a long time. But mainly......I have better muscle endurance and strength, fewer spasms, I take a LOT less anti-spaze meds like valium. My bladder holds more before I get the urge to "go" (cath), bowels work better without all the softners and other junk I needed before. Now just use the magic bullet occassionally. Hot and cold sensation has improved, cold more than hot though.

                          I'm currently taking 20mg three times a day with meals. I did that after a very slow ramp up to 45mg for 2 years or so then switched to 60mg a ay. Very few side effects when you ramp up slowly. Had some numby feeling around my lips, felt like a hummingbird on speed a few times and some troubles sleeping. Oh...and occassionally spasms would get worse for a bit and then a muscle would start working better. Kind of hard to fit the benefits I've had in to little circles of accomplishments like a) can now walk, b) no longer uses catheters, etc. It's sometimes subtle differences but, for me, they add up to a lot.
                          Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

                          Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

                          Comment


                            #14
                            Not All 4-AP Is Created Equal

                            The first 4-AP study that I participated in was in 1995, and took place at the Long Beach V.A. in California. Elan Pharmaceuticals sold the patents to the 4-AP time release formulation to Acorda Therapeutics. Below is a letter that I wrote to an attorney, and I included my experience with this compound. In 1997 I started the long-term phase of the 4-AP clinical trials at the Long Beach V.A. I was in the study for a little over three years and during that time the trials were moved to UCLA. Larry Barnes died around 1998 due to SCI complications. He was a graduate of Rice University with a B.S. in engineering. When I knew him, he was working at TRW and pursuing his master's degree in psychology. May he R.I.P.
                            July 24, 1996

                            Dear David,

                            I enjoyed our meeting with you and your legal advice has been helpful so far. I am still working on getting a new power chair and I will know in about five more weeks if it will be approved or not. I also contacted Larry Barnes and have come to the conclusion that this accident with his bathtub lift has been a significant setback to his physical health. He told me about the different medications he is now taking since this happened and although it may or may not be a lot for his condition at this time, I told him about the benefits of 4-AP when I was in the study.
                            I strongly believe that this drug can help many people with spinal cord injuries and I don't want to see this "fall through the cracks." When I took 4-AP, it reduced my pain by 80% and did about the same for my tight muscles and spasticity. It also improved my sensation by moving it closer to normal. I also believe that it did restore or improve muscle function, somewhere between 3 and 5 per cent.
                            For people with pain and discomfort, where the choice is narcotics, evasive surgery to cauterize damaged spinal nerves, or just live with it, 4-AP seems to take care of these problems.
                            While on the medication I experienced no cognitive or physical side effects or withdrawals. I found that when I woke up in the morning (sometimes a little bit earlier), I felt refreshed as well as a slightly improved bowel program.

                            Sincerely,

                            Paul Nussbaum
                            The test of success is not what you do when you are on top. Success is how high you bounce when you hit the bottom
                            --General George Patton

                            Complex problems need to be solved collectively.
                            ––Paul Nussbaum
                            usc87.blogspot.com

                            Comment


                              #15
                              I agree Paul. I would much rather take the sustained release formula that Acorda Therapeutics is taking through trials. Just having a steady stream of the drug in your system and not having to judge the highs and lows would be fantastic. And I never had heartburn on the Elan formula either. I would think since it's the only real thing out there so far for chronic injuries that the FDA would speed things up a bit it seems the opposite is true. I doubt they have a clue how different each incomplete injury is from another.
                              Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

                              Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

                              Comment

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