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mark1954

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    mark1954

    Hi, this is my first posting as I only recently joined MS World. I was diagnosed w/MS at age 58 and am now 64. I was on Avonex initially and then on Tysabri for my MS. After 4 years of receiving infusions of Tysabri I developed PML due to the drug and my neurologist placed me on Capaxone. I received Copaxone injections for a year then my assistance with funding for my co-pay ran out due to my income and I ceased the injections due to the $1,000.00+/mo. cost to me. That is, I chose not to squander my retirement money on a drug which could not possibly make me any better given the devastation PML had already caused. I hope to hear from others with PML and wonder whether they have found any relief in medical marijuana/CBD oil and, if so, at what cost. Thanks for any help that you can provide.

    #2
    Hi Mark1954.

    So sorry to hear about your battle with PML. I am on Tysabri in 7th year, but have been fortunate to still be JCV negative. If you don't mind did you contact it before they did testing for the JCV antibodies and created risk assessment matrix?

    How have you recovered? I am sure it has been a long road. You may want to post a thread titled PML in the general board and ask your questions. It may get more views there.

    Can understand your reason for stopping Copaxone. I think they are going to do some research on age and MS, at least I hope. Hoping the old theory that MS burns itself out is true so it will make the decision to stop a DMT easier.

    Look forward to more posts.
    Kathy
    DX 01/06, currently on Tysabri

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      #3
      PML

      Kathy, thank you for your response. I, too, am a Pennstater, twice over, as is my wife. To answer your questions, I knew that I was JCV positive before I acquired PML but my titer was low. I took a risk that I now regret. I was told my risk of PML on Tysabri was 1 in 10,000, but I now believe that it was much higher.

      I appear like a person who has had a major stroke with residual disability. I am unable to use my right arm and right leg and speaking is very difficult. I walk slowly with a cane. I have had two seizures where I ended up in the hospital and for which I probably will have to take Kepro for the rest of my life. My remaining symptoms are the usual MS symptoms (chronic fatigue, depression, blurry eyesight, numbness, tingling, incontinence, etc.), only slightly worse. Still, my neurologist considers me a PML success story!

      I saw him two days ago and we discussed medical marijuana. To my surprise, he encouraged me to see if it could help and I went home and registered with the state. I now have to go to a certifying physician who will certify that I have one of the seventeen serious medical conditions for which medical marijuana is approved. I then pay the state a fee and get my medical marijuana card. Then a trip to the nearest marijuana dispensary. I am anxious to see if it will help.

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        #4
        Hi Mark.

        Always nice to meet fellow Nittany Lions. From your profile, it looks like opposite sides of the state now. I actually have been to Cranberry a few times, as two of my college friends live there. Very nice area. Can't believe the Skeller closed and possibly the Diner in State College. It has changed so much.

        Thanks for sharing your story. If I become positive, not sure what I will do. I know length of time on Ty becomes part of the equation along with titer. Not sure if I will just extend out the dosing to 8 weeks or stop. Your story will give me a lot to think about.

        I am very sorry to hear that both you contracted PML and that you are left with disabling symptoms. Given all I have read about PML, I can see why your docs feel you are a miracle.

        I pray your application is quickly approved and that you get some symptom relief using medical marijuana. I will be looking for uodates.

        Hope to see more from you!
        Kathy
        DX 01/06, currently on Tysabri

        Comment


          #5
          Hi Mark and welcome!

          I hope that medical marijuana helps you and that your symptoms ease up.

          Let us know how it goes. Many of us are interested, as more and more states are legalizing it.

          Good luck and wishing you the best!

          Take Care
          PPMS for 26 years (dx 1998)
          ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

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