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Not a lot of post in here? Just DX with PRMS so..

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    Not a lot of post in here? Just DX with PRMS so..

    Hello all,
    I have just been DX with PRMS I am starting Gilenya on Monday. Can you offer any advice. This is completely new to me although I have gotten over the denial and it has been 8 months with a MS DX. We, My wife and My Neuro just had a long talk about it all. I just still don't know what to expect. Does it still fall under the "we are all different"? All MS is different catagory?

    What meds are you on?
    Is Gilenya any good? "some love it, some hate it..."
    What helps you with daily pains? (I won't do opiates and don't care for pills)
    Is there not a lot of people with PRMS for real?
    Its funny I think I just write these post so I don't forget how to write / spell.? Spelling sucks lately?
    aaarrrrrrgggghhhhhhh!!!
    Thanks

    #2
    Originally posted by vender View Post
    Hello all,
    I have just been DX with PRMS I am starting Gilenya on Monday. Can you offer any advice. This is completely new to me although I have gotten over the denial and it has been 8 months with a MS DX. We, My wife and My Neuro just had a long talk about it all. I just still don't know what to expect. Does it still fall under the "we are all different"? All MS is different catagory?

    What meds are you on?
    Is Gilenya any good? "some love it, some hate it..."
    What helps you with daily pains? (I won't do opiates and don't care for pills)
    Is there not a lot of people with PRMS for real?
    Its funny I think I just write these post so I don't forget how to write / spell.? Spelling sucks lately?
    aaarrrrrrgggghhhhhhh!!!
    Thanks
    Hi vender

    The way I understand it, all MS is basically the same as it involves the demyelination and neurodegeneration of nerves in the brain and/or spinal cord.

    The various symptoms (fatigue, bladder issues, eye issues, etc) seem to span across all the different types of MS. Although not everyone, regardless of MS type, has all the exact same symptoms. (Weird disease, huh?)

    There are different courses that the disease takes, though.

    The National MS Society has recently modified the descriptions of the four types of MS courses.

    PRMS now falls under active PPMS with relapses.

    I have PPMS and do not take any DMD's because of no relapses (acute inflammatory events).

    Here is the chart from the NMSS showing the four courses:

    http://www.nationalmssociety.org/What-is-MS/Types-of-MS

    It's seems a little more confusing to me than before.

    Hopefully you get feedback from those who use Gilenya, and wishing you good luck!

    Take Care
    PPMS for 22 years (dx 1998)
    ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

    Comment


      #3
      Originally posted by KoKo View Post
      Hi vender

      The way I understand it, all MS is basically the same as it involves the demyelination and neurodegeneration of nerves in the brain and/or spinal cord.

      The various symptoms (fatigue, bladder issues, eye issues, etc) seem to span across all the different types of MS. Although not everyone, regardless of MS type, has all the exact same symptoms. (Weird disease, huh?)

      There are different courses that the disease takes, though.

      The National MS Society has recently modified the descriptions of the four types of MS courses.

      PRMS now falls under active PPMS with relapses.

      I have PPMS and do not take any DMD's because of no relapses (acute inflammatory events).

      Here is the chart from the NMSS showing the four courses:

      http://www.nationalmssociety.org/What-is-MS/Types-of-MS

      It's seems a little more confusing to me than before.

      Hopefully you get feedback from those who use Gilenya, and wishing you good luck!

      Take Care
      I guess some Neuros haven't adopted it yet? That's all she does is MS. I guess it doesn't matter, it just makes me laugh "be glad it's not PPMS" was said. Lol.

      Comment


        #4
        Originally posted by vender View Post
        I guess some Neuros haven't adopted it yet? That's all she does is MS. I guess it doesn't matter, it just makes me laugh "be glad it's not PPMS" was said. Lol.
        vender

        You're right it really doesn't make a difference - PRMS is Progressive Relapsing MS which is just another way of saying Progressive MS with Relapses.

        What does make a difference though, is that there are disease modifying drugs to help with the relapsing part.

        My neuro said that even though I have PPMS (for 18 years without a relapse), it is not beyond the realm of possibility to have a relapse, which surprised me at the time he said it.

        Originally posted by vender View Post
        it just makes me laugh "be glad it's not PPMS" was said. Lol.
        In my opinion, because we're all unique with MS, there is no way to really say which course of MS is better or worse for any individual. It kind of depends on where the damage is, and what the resulting disabilities are, regardless of the type of MS.

        Take Care
        PPMS for 22 years (dx 1998)
        ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

        Comment


          #5
          vender,
          There are 4 typical forms of this disease, from what I gather ! And you seem to have hit the lotto ! PRMS is a 'rare' form, meaning that,of the entire MS population of MSer's, PRMS is diagnosed the least .
          I have PPMS and it is seriously beating me up ! I take Tecfidera, although I don't feel anything like improvement ! I, seriously, don't believe that there is anything on the market that helps with the symptoms of MS ! The DMT's may help to ward off relapses . Who really knows ! I wish you the best ! I would try a DMD, if I were in your shoes ! Good luck

          Comment


            #6
            Originally posted by JerryD View Post
            vender,
            There are 4 typical forms of this disease, from what I gather ! And you seem to have hit the lotto ! PRMS is a 'rare' form, meaning that,of the entire MS population of MSer's, PRMS is diagnosed the least .
            I have PPMS and it is seriously beating me up ! I take Tecfidera, although I don't feel anything like improvement ! I, seriously, don't believe that there is anything on the market that helps with the symptoms of MS ! The DMT's may help to ward off relapses . Who really knows ! I wish you the best ! I would try a DMD, if I were in your shoes ! Good luck
            Hello Jerry. Gilenya is a DMD so that's good. The PRMS doesn't make me happy but all MS sucks. Right? I just hope I'm not expecting to much from gilenya. I'm sitting at the cardios now FDO.

            I'm just waiting for the cure. So this will have to do for now. If I have to move to Canada or Europe I will to get stem cell treatment. If it gets worse. It only seems to get worse that's why I'm hopefull gilenya will make a big difference. Good luck all!!

            Comment

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