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  • Something is changing something...

    I wish I could find a doctor that would help me thru this. (Mayo says PPMS at age 64. U of I says SPMS at age 65. Now almost 69).
    Since none of the doctor's I've seen since the Mayo have offered anything in the way of treatment, I've been getting just home visits from a PA, some OT, PT, but nothing really useful. Around July 1st, I had what I assume was a pseudo-exacerbation. Then, in July I started Acetyl L Cysteine...I've worked up to 2400mg a day. Early November, I added Co-Q10. Whereas episodes used to be every six weeks or so, I went from July 1 until Nov 26th between attacks...and even that one was mild.

    Now, the last two days, as I was coming from the bathroom to my desk using my walker...I actually started walking. 8 or 10 steps. No strain, no dragging my left foot, honest to god one foot in front of the other normal gait.

    What's going on?

  • #2
    I can't explain it, but congrats!!!

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    • #3
      Thanks! I just wish I knew why...I'd keep doing whatever it is. The last "good steps" were on 12/6. Since then, I've had spurts of 2 or 3 good steps going to bed, and 8 or 10 almost good getting out of bed and walking to make coffee...but the feeling of complete relaxation in my leg leg as I move it isn't there.

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      • #4
        This is really wonderful news! Keep doing what you're doing, and maybe add more PT if they'll let you so you can make the most of this. Happy early holidays!

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        • #5
          Thanks for the good thoughts.

          Its getting weird. Two or three absolutely normal steps, and then my left leg goes wonky again and I'm dragging the foot. I'd like to think PT had something to do with it, but other than "imaging" muscle movements, I've done no exercise. Honestly, I'm in the midst of a bout of chronic to severe don't give a shit and I can't work up the courage to exercise. I live alone...I've got a call button, but I'd rather not hit the floor again.

          Medication wise, the only change since the first of the month is added generic Flomax to the mix...but, as I understand it, the upper leg muscles aren't the muscles its supposed to relax.

          I do know my immune system is revving up. The rug burns from my last slump to the floor before thanksgiving have healed already in what, 3 weeks? Just a little patch of read skin...scab is completely gone.

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          • #6
            Next symptom. Woke up at 2am. Diarrhea. Got out of bed...WALKED with rollator into bathroom. Changed underwear on toilet. WALKED back to bed and noticed mess. Had to call an aid to change sheets and help me clean up. Got back in bed. Woke up at 5:30. Back to bathroom. Stayed up...went to my powerchair...dragging left leg. Back in bathroom at 8:30

            Its like 10am now. Stomach is still gurlgy but seems okay.

            This could be a side effect of Flowmax.

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            • #7
              I'm not familiar with the acteyl l cysteine stuff but aren't most people with either PPMS or SPMS on one of the A, B, C or R drugs?
              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.

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              • #8
                Turns out that the diarrhea was probably a bug of some kind going around the building here. One of the care attendents told me that half the staff and many of the tenants had the same thing.

                Acetyl L Cysteine is part of the Vanderbilt Protocol. See www.cpnhelp.org Some researchers at Vandy and in England have found that SOME cases of MS respond to long term treatment of antibiotics. The theory is that SOME MS is triggered by infection by Chadophilia Pneumonia (sp?), a common bacteria but in some people affects the nervous system. The bacteria exists in three distinct forms...ALC attacks one of those forms. Its not a cure because the other forms of the bacteria are stil in the body, but a positive response to ACL is an indicator of a CPN infection.

                This same bacteria has also been implicated in arterial sclersosis which I also have.

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                • #9
                  Ok, now that you tie in the chladminia pneumonia I understand the ALC treatment.
                  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


                  • #10
                    So...today, I'm walking (with rollator, just in case). One foot after the other. Out of bed to make coffee...to the frig...to my recliner. Up an hour later to the bathroom and back. Some slight effort, but no foot drag. WTF?

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                    • #11
                      Upon further review...maybe it was the Flomax. Started taking it again Sunday Morning. Monday afternoon...cramps...barely made it to the bathroom. Not exactly diarrhea, but not normal either. Two trips. Don't need that.

                      I'm still moving better, but I don't need to leave a trail.

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                      • #12
                        Improvement continues. Sort of. Lying in bed before getting up, I'm extremely...extremely...rigid. Slightest movement puts a cramp somewhere. But, as soon as I swing my feet to the floor, it goes away. Stand up, use my rollator and walk into the kitchen to make coffee. Slight foot drag getting to my chair to work.

                        I've sent for the antibiotics. We'll see what happens.

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                        • #13
                          Just an update. I've got antibiotics. I'm starting off with 100mg Doxycycline. Things are a little worse...still manageable, but maybe a baby step backwards.

                          Going back over my records, I note that I had an infected lymph node excised on my back around July 2013. The doctor gave me 4 weeks of 100mg Minocycline / twice a day. It was about then that walking improved. Interesting.

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                          • #14
                            Originally posted by willingtocope View Post
                            Just an update. I've got antibiotics. I'm starting off with 100mg Doxycycline. Things are a little worse...still manageable, but maybe a baby step backwards.

                            Going back over my records, I note that I had an infected lymph node excised on my back around July 2013. The doctor gave me 4 weeks of 100mg Minocycline / twice a day. It was about then that walking improved. Interesting.
                            Very encouraging! Wishing you all the best.

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