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    new to this forum but not new to MS

    Hi everyone my name is Craig Im a 52 year "OLD" man I have a beautiful wife of 25 years, 4 children and a grand daughter 18mth young, I live in Queensland Australia (beautiful one day perfect the next). I have had MS for more than 20 years I have been on a lot of hormones for other problems which seem to have masked most of my symptoms, I am now having "tysabri" infusions every 28 days on my fifth infusion, Im jc-.
    I can't tell if the Ty is helping or not I don't feel any euphoria or energy from this treatment but my Neuro told me thats not what it does, I had just hoped for something more from this. I went from staggering to a wheelchair in a number of months my neuro started me on solumedrol and that got me back on my feet in days I couldn't believe it, but six months later Im going down that same path again, had the solumedrol but didn't notice any thing happen hope it just takes a little longer this time.
    I have a lot of trust in my neurologist and find him easy to talk to and easy to approach even by phone, my time with him is never rushed I don't feel like he is pushing me out the door and calling next. Thanks for listening Craig

    #2
    Hi Craig,

    I have been on Tysabri for 9 1/2 years. I noticed a lessoning of symtoms (sx) (after approx 6 infusions)[ the sx were fatigue, balance and stamina-not my R leg dragging] BUT it is important for me to say that my MRIs showed no new or active lesions and my progression halted... what an absolute blessing!

    I hope you do, at least, as well as I.

    Linda
    Linda

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      #3
      Hi Craige. I am in QLD too. Sounds like we may have the same doc now.
      Have had MS for over 30 years.
      Am 49. Mum of 5 boys- sorry - men.
      Have been on Ty for four yrs in May this yr. JC+.
      I haven't noticed any euphoric like benifit as i have heard others say.
      I usually feel like i getting the flu for about 24ish hrs and very tired.
      There hasn't been any improvement in symptoms , but then that isn't what Ty does.
      I have actually been steadily going down hill symptom wise for about 2 yrs now and am probably SPms now rather than RRMS.
      Are you RRMS? Some consider if you have had MS for over 20yrs you have progressed past RRMS.
      Could your return of symptoms after 6 months be a relapse?
      It has also been a hot summer and I have found this hard to deal with. You?
      All the best.

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        #4
        Hi Carolinemf
        My DR is Johan Kyuler Bundaberg
        and thanks for your message the summer heat does wear me down and yes I am spMS now,

        Dr thinks it may well be another relapse I will be getting another MRI in a couple of weeks and like you feel like I'm going down hill my symptoms don't go away like they use to.
        How do you feel being JC+ and on Ty I'm just hoping my next JC test is still neg, but i guess I would have to weigh up the pros and cons. Craig

        Hi Lindencolorado up unto 6 months ago I had never heard of Tysabri and here you are 9 years on it and no active lesions, I'm still confident it is going to help, just get down sometimes, I was hoping for a miracle thanks for your message i will keep pushing forward Craig

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          #5
          Hi again Craig.
          Yep Dr Kyuler too.
          As far as being JC+ is concerned I'm having regular titre checks and will have to evaluate if they rise. We have 6 monthly tests and consult and he asks do I want to continue each time.

          I feel I'm at a bit of a crossroads at the moment- coming to terms with progression (rather than the well known and familiar relapses)as my symptoms aren't going away like they used to either.

          I've got menopause coming up & I have always been one of those in who hormonal fluctuations act as a catalyst. Nervous that this will worsen things too.

          And my cognitive issues seem to have worsened steadily over the last couple of years and this scares the crap out of me. I've become a bit of a hermit.

          Doc says 'no change in MRI so stable'. I now know that you can still have degeneration and progression without increased lesions.

          My next neuro apt is in June and I would like to have a few things sorted to discuss with him then.
          Uncertainty is hardest thing to deal with and everything is getting me down a bit.
          I been discussing things with my gp and he's been forwarding any relevant info on.

          Also on the bright side the heat has eased a little lately and some days I actually feel like doing something.http://www.msworld.org/forum/images/icons/icon14.png

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