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Thread: Paraparesis / Paralasys

  1. #1
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    Paraparesis / Paralasys

    Well the Paralasys is now effecting my arms and know something I am scared.

    I could live with the Paralasys in my legs but this arm thing is a whole new ball game.

    Was working at my computer this morning and all of a sudden my arms would not work, they settled after a few minutes but the fright brought tears to my eyes.

    I am seeing my Rehab Doctor on Friday, but he did tell me some time ago that my arms may become effected and he was right.

  2. #2
    Quote Originally Posted by dorvad
    Well the Paralasys is now effecting my arms and know something I am scared.

    I could live with the Paralasys in my legs but this arm thing is a whole new ball game.

    Was working at my computer this morning and all of a sudden my arms would not work, they settled after a few minutes but the fright brought tears to my eyes.

    I am seeing my Rehab Doctor on Friday, but he did tell me some time ago that my arms may become effected and he was right.

    Dorvad, I am so sorry to hear that you are progressing. Have they considered vitamin B12 therapy? This is the traditional treatment of this condition.

    Wise.

  3. #3
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    Wise thanks for your input, I am on fortnightly injections, and that is helping with the other side effects of this condition, balance, spasticity, attaxia etc, but the paralasys seems to be very stubborn and the B12 regime is not having any effect on the arm and leg paraparesis.
    I was told that damage to the cord, myelin sheath is often irriversible, but I was also told the condition would remain static by my Neurologist which it has not.
    I am monitored each fortnight by my GP when I get my shots and weekly by my Physiotherapist at the hospital, that is where I suffer most of my leg paraparesis during my excercises, worst of all is walking up stairs which I do as part of my physio.
    Last edited by dorvad; 12-12-2006 at 02:08 AM.

  4. #4
    Quote Originally Posted by dorvad
    Wise thanks for your input, I am on fortnightly injections, and that is helping with the other side effects of this condition, balance, spasticity, attaxia etc, but the paralasys seems to be very stubborn and the B12 regime is not having any effect on the arm and leg paraparesis.
    I was told that damage to the cord, myelin sheath is often irriversible, but I was also told the condition would remain static by my Neurologist which it has not.
    I am monitored each fortnight by my GP when I get my shots and weekly by my Physiotherapist at the hospital, that is where I suffer most of my leg paraparesis during my excercises, worst of all is walking up stairs which I do as part of my physio.
    I don't have very much experience with this condition but I have the impression that it is reversible if caught early enough and treated with high-dose B12 injections. Also, there are many therapies that are showing great efficacy in remyelinating axons, including a number of different stem cells. So, I believe that you will get back function.

    Wise.

  5. #5
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    You are right it is reversible if caught early, but according to my specialists, I probably had it for 10 to 12 years before I was diagnosed.
    This is why the condition has not been completely turned around by the high dosage B12 that I am receiving.

    I am interested in your comments about re myelation in regards to the cord, could you give me some more information on that.
    Last edited by dorvad; 12-12-2006 at 07:22 AM.

  6. #6
    Super Moderator Sue Pendleton's Avatar
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    Quote Originally Posted by dorvad
    You are right it is reversible if caught early, but according to my specialists, I probably had it for 10 to 12 years before I was diagnosed.
    This is why the condition has not been completely turned around by the high dosage B12 that I am receiving.

    I am interested in your comments about re myelation in regards to the cord, could you give me some more information on that.
    What kind of symptoms did you have early on? I know. Easier to seethem looking back. And I agree with Wise. The TMA is funding research to remyelinate a couple of conditions.
    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.

  7. #7
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    Had very heavy legs, almost numb had severe body shakes , bladder problems , balance problems, tremors.
    Mentioned this to an array of Doctors from specialists to GP's for over 10 years no one listend.
    Only when I was admited to hospital with leg paralysis was anything done and I was only admited because I was running a high fever.
    The normal test for this is to stand totaly straight legs together close your eyes and remain upright, I just fell over, then I had to sit on the bed arms crossed and stand up I could not.
    Then they took a myriad of blood tests and started me on the B12 injections.
    Was at my GP today and he told me there is a significant possiblity that I will be unable to move my legs or arms on a permanent basis, not something I wanted to hear, but I am damned if I will give in.

  8. #8
    Quote Originally Posted by dorvad
    You are right it is reversible if caught early, but according to my specialists, I probably had it for 10 to 12 years before I was diagnosed.
    This is why the condition has not been completely turned around by the high dosage B12 that I am receiving.

    I am interested in your comments about re myelation in regards to the cord, could you give me some more information on that.
    I had posted quite a long reply on remyelination but it did not post for some reason. There is a huge amount of information on the subject. May I suggest that you do a search for "remyelination" on this site. While you are at it, you should also search for "Fampridine".

    Wise.

  9. #9
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    Saw my Rehab Doctor yesterday he did all the normal tests and my responses were very good even my strength was much improved, he has asked me to get a second opinion from another Neurologist regarding the paraparesis as early as possible in the new year.
    I am to continue with my Rehab programme at the hospital, that made me very happy as I thought they may cut me as I have been going for almost 18 months.

    He has suggested someone for me to see but I am toying with idea of seeing a spinal / neurologist at the hospital that specialises in spinal cord injury, if they will agree to see me.

    To all have a Blessed Christmas and a better 2007.

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