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    Hello everyone,

    I started taking Ampyra 10mg time released about three months ago. Although I'm not completely new to taking it. I took it for almost two years when it was still in study trials with Dr. Wise and we had to have it compounded. I decided to give it a try again and see if I could benefit from it again.

    After I started taking it I did noticed some side effects, small ones like nausea. I did what most of us do, and pushed through it. In the short time I've been taking Ampyra I've had bladder issues. I've been having issues with bladder stones and had to get some removed, also constant bladder infections. Normally I get bladder infections from cathing, shoulder and back pain from over use, and my list could go on... Nothing that years in my chair has made it my normal. I got rid of the stone finally after over a month of dealing with it, so I figured things would go back to my crazy normal. Well life wouldn't be fun without new crazy prying into it. I've noticed that most of the symptoms I've been experiencing if from AD. Nothing scary enough to go to the ER (not that they would know anything) but plenty to make me miserable. So finally to my question... Could the Ampyra be stimulating my body and causing it to be more sensitive to triggering my AD symptoms? With all the issues going on since I started it, I can't be sure what's causing it. I don't have a uti right now, but I'm on my menstrual cycle and that is a living hell for its duration. I've thought about stopping it but it's never good to stop cold. I'm not sure how long after my cycle ends that I should wait to see if things get better? Has anyone had these issues? Any insight is appreciated, it took me over a year to get Ampyra and sadly the doctors here are useless to anything dealing with paraplegia. My symptoms include; cold sweats. dizziness, headache, nausea, and misery..
    It is not how we fall that defines us..
    It is how we rise.

    I have not worked with Ampyra much, except in MS patients (for whom this drug was approved). Off label use for SCI and other forms of paralysis has not been well studied.

    That being said, Ampyra works by increasing nerve conduction efficiency. Theoretically you could more easily experience AD from painful stimuli below your level of injury, as Ampyra is documented to improve sensation below the level of injury in many people with SCI. I would suggest discussing continued use with the physician who is prescribing your Ampyra, and if you decide to stop it, also planning a taper program to safely stop taking this drug.

    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.


      Sorry to hear about your troubles! I was using 4AP, Ampyra and novel 4-AP-3-MeOH compound that was derived from previous ones.
      Nothing works better than 4AP-3-MeOH. I did try it! Works wonders...
      My personal "trial" went to phase 1 only. Unfortunately I stay without proper supplier to proceed.
      Even now I can not find good supplier. There are compound pharmacies to make 4-AP-3-MeOH
      but they will not portion it to 0.5mg capsules. They are selling only as a bulk.
      Without that part (to get portioned compound in capsules) you can not take it.
      (btw - daily dose is max 3mg but its 10X more potent and effective);
      If you solve this "portioning" problem, please contact me!
      I hope you'd feel better !!!
      Why they are not doing human trials on 4-AP-3-MeOH with SCI?!
      And why Ampyra never succeed to be even official potassium channel blocker for SCI patients?
      Reason is simple = $$$$$$$$
      How and why?
      As every spinal cord injury is different people with SCI react differently to different dosages of medicament!
      With MS patients you can generalize some effects and nerve stim
      with Ampyra with not many side effects can be applied.
      No troubles!
      But not much benefits either!
      With SCI some people can die with wrong dosage.
      That's happened in one 4AP / Ampyra trial.
      After that anything novel with 4-AP prefix by default went to ditch.
      Money-wise not good !!
      Imagine insurance claims in uncharted 4-AP-3-MeOH territory!!
      That's why so far NO human trials regardless of research results and reports of numerous of people
      with SCI about great benefits from use of 4-AP-3-MeOH
      after trying and testing this compound purchased from compound pharmacies.
      nothing but shame....
      Last edited by comad; 15 Aug 2019, 11:58 PM. Reason: adding" p.s". after bottle of bad white wine

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


        I should have mentioned that I have TM, Also I've noticed that I don't have these symptoms when I use cannabis. I've been out for a couple weeks and finally got some today and notice an immediate change.
        It is not how we fall that defines us..
        It is how we rise.