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Thread: The 4-AP List

  1. #61
    Sue: I first learned about 4-AP in 1989. I think it is a good idea to wait for FDA approval of Fampridine-SR. If you have any questions, feel free to e-mail me.

    I have noticed that my fingers are more relaxed and I can flex my left wrist up and down. I do not think that I will be seeing any more changes at this time. I do about three and a half hours of physical therapy every day.

    Good luck.

    PN

  2. #62
    This may be my last post for awhile because I do not expect to see any more changes. Last Saturday I was going through the range of motion and my caregiver needed to get up, which left me lying on the floor. For some reason I decided to see if I could sit up and I got a little momentum going in my hips and legs, and I was able to come to a sitting position. My legs were out straight and I was very stable. I was never able to do this before.

    I have mentioned this to other people who are clinical trials. Do not overlook the potential of just getting down on the floor like a baby and see what happens.

    By the way, I try to do about two and a half to three hours of physical therapy every day.

    PN

  3. #63
    Senior Member nevada's Avatar
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    Not wanting to steal Paul's thread but thought I would mention what I have noticed now that I have been on 4AP for a month now through the Accorda study.

    Changes
    1. Much improved sensation in my pelvis area
    2. Bowel routine daily and only 5 to 10 minutes max using no suppositories, no stool softener or anything else other than dig stim
    3. Some reduction in extensor tone
    4. Some reduction in spasms
    5. No urine leaking
    6 Improvement in my walking with braces and walker
    7 Increase in pain in certain areas


    No Changes
    1 Still no sexual function increase
    2 Increase in voluntary muscle movement


    Problems incountered
    Just one for now with the increase in pelvis sensation I am having a harder time with the intermitting cathing i.e. cath wont go into the bladder as easy as before. I saw an urologist the other day and he could find nothing wrong with the urinary tract. He said it might be muscle spasms causing the bladder to contract. My spasms only occur with stimulation of some sort and inserting a catheter would defiantly qualify as stimulation

    Just my observations in the last month

    Nevada

    [This message was edited by nevada on 03-26-04 at 11:43 AM.]

  4. #64
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    I contacted Accorda and was told the Fampridine studies were completed. How are some of you still getting this medication?

  5. #65
    Originally posted by nevada:

    Not wanting to steal Paul's thread but thought I would mention what I have noticed now that I have been on 4AP for a month now through the Accorda study.
    Nevada, you are not stealing my thread. In fact, anyone in the clinical trials should post their results on this "thread."

    I do not believe that the "Fampridine" trials are finished. I have an appointment this coming Tuesday at the Long Beach VA in California.

    PN

    [This message was edited by Paul Nussbaum on 03-27-04 at 01:32 AM.]

  6. #66
    jenet, for those people who were on the Acorda Fampridine trials, as well as those who were screened but not randomized, Acorda is offering places for them in an "Open-Label" trial. People who were in the original trials or who were turned down for the original trials are eligible. Wise.

  7. #67
    Senior Member nevada's Avatar
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    Well it has been two months now that I have been on the Phase IV study. I am a C6/7 incomplete two years post as of yesterday April 20th some of the changes that have occurred are as follows

    1 Daily bowel movement taking no longer than 10 minutes using only minimal digital stimulation. Anal sphincter muscle is as tight as a vice the last three weeks

    2 No accidental urination or leakage at all. Nighttime cathing has been reduced

    3 Increased sensation in my buttocks to the point that sitting in the chair for a eight hour day of work causes me to be unable to find a comfortable position the last hour or so of work.

    4 Increase of warmth feeling to touch of the skin in my lower body. This feeling stops at my knees at the present time.

    5 Nighttime erections, which I never had prior to the study.

    6. Sleeping better at night

    7. A muscle score of three in my ankles and toes were there was none previously. Trace of movement in my Quads, hip flexors, and hip extensors.

    8. Increase in distance and reduction of time in my brace-walking endeavor


    Now the cons as I see them

    1 Increase in sensation has been a double-edged sword so to speak

    2 Increase in naturopathic pain at my elbows to the point some nights that even the sheet touching them causes me to grimace


    3 Itching of my hands and elbows that I can scratch until the cows come home and find little if any relieve. This is mostly early in the morning.

    I will keep on posting as each month goes by


    Nevada

  8. #68
    Nevada:

    Are you doing physical therapy/range of motion every day?

    PN

  9. #69
    Senior Member nevada's Avatar
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    Paul

    To answer your question yes I am doing PT and no I do not do ROM everyday. I walk 300 feet with braces and a front wheel walker twice a week at a small hospital pt dept. My therapist there is a goddess. She has worked with me from the first week out of rehab as a home health care specialist. I do stand in my standing frame daily for at least an hour and I walk around the house on the weekend with my wife. I also attended Sittall Standtall for six months last year. I am sure that I was getting the drug during the phase III study as many of the things happening now were just starting to manifest themselves before I was taken off the drug for the one month ramp down. Still I yet to see the reduction in my extensor tone that I had hoped for. My spasms are less than once an hour and only by stimulation mainly which is related to me moving my arms to my sides in bed or raising my arms over my head while in the chair.


    Nevada

  10. #70
    Tuesday, June 22, 2004, at 7:30 am I took my last caplet. Now that I am no longer on the medication I have increased spasms, tone and pain. I have not been able to sleep very well because of the pain and spasms. All of the benefits that I had gained are gone. This is my last post on this topic!

    PN

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