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PPMS from the start

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    #16
    Originally posted by 502E79 View Post

    Yeah. The DMT's can be the only reason for the one-step-at-a-time route now taken in a dx. I would not enjoy having been told PPMS at dx. It had to have been tough hearing that! Any MS dx is horrible but throw Primary Progressive in front... yikes!
    Absolutely!
    Tawanda
    ___________________________________________
    Diagnosed with Multiple Sclerosis 2004; First sign of trouble: 1994

    Comment


      #17
      Originally posted by pennstater View Post
      Tawanda - I am grateful you come to the boards, along with other PPMS members.

      The insights you provide, the adaptability you all show, and your genuine willingness to help those with RRMS, as well as those who transitioned to SPMS, make this a better board. I actually feel selfish at times, as I feel I can never really help with the progression posts, but yet, benefit so much from all of your wisdom.

      So a big thank you to all who continue to post. Please stick around!
      (((Kathy))). Thanks! I enjoy reading your posts as well!
      Tawanda
      ___________________________________________
      Diagnosed with Multiple Sclerosis 2004; First sign of trouble: 1994

      Comment


        #18
        Hi Jer,
        I'm JerryD from the suburbs outside of Philadelphia, PA. I was dx'd PPMS right out of the gate in the fall of 2009 by a general neurologist who never discussed with me about using a DMT 'off-label' ! Because all of the meds were FDA approved for treating RRMS ! What B.S. !
        I went to the University of Pennsylvania and my dx was confirmed by the 'big cheese', there. I spent the next 6 years trying to find an MS specialist near my home . I found the right doctor, that treats about 300 MS patients in his practice. I received the Lemtrada infusions but I continue to feel progressive decline.
        I'm, currently, using a power wheelchair. My house has been modified to let me stay on one level.
        So, my response to your post is mostly about my experiences. I know this disease is just mind blowing. Good luck ! God speed !

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          #19
          Tawanda,

          Thanks for your posting, even though I enjoyed your comments and input over the years I never realized you were also PP. Should always check the profile or archived posts, I guess.

          I agree with Pennstater with regards to helping as best as one can.

          There can be overlap with RRMS sx. Noticed in my earlier years, when a thread addressed concerns like crawling ants, hot or burnt feelings, spasticity related pain, fatigue issues even.... I could help! Gotcha covered!

          Over time the sx vanished or became part of to my new family, so-to-speak....

          Other PP thoughts welcome.... Any thoughts really.

          Comment


            #20
            Hi JerryD!

            I'm north of you in the Poconos... a few hours. In 2008 at my RRMS dx, my neuro wanted me to make a quick decision....DMT asap! Copaxone was relatively new at the time and the zeitgeist in '08 was throw a DMT at it.

            After visiting MSW in 2009, I realized the difference in my experiences and the general population. I waited for the remission as Tawanda did. Only got a fade away... good by to this, that, something else....

            So after about 8 years of Copaxone, (stopped C 2+ years ago). No problems taking it except the cost. Still on decline. Quicker? Don't think so. Same slope IMO.

            So far the PP has been kind, my right side is really poor, but the left isn't, so "turn the page." No DMT's now.

            Jerry, thanks for sharing your journey and Godspeed to you also!

            Jer

            Comment


              #21
              Originally posted by 502E79 View Post
              There can be overlap with RRMS sx. Noticed in my earlier years, when a thread addressed concerns like crawling ants, hot or burnt feelings, spasticity related pain, fatigue issues even....
              The end result for all types of MS (whether due to demyelination or neurodegeneration) is impaired or blocked nerve signals.

              So, depending on which nerve tracts are affected, and how much damage there is, many symptoms can be similar for all types of MS.

              It's the course that the MS disease takes (whether continuously worsening progression, or relapsing-remitting, or both) that makes up the 'type' differences.

              Jer, I have very limited use of my entire right side also. Thankfully my left side is probably 80%, at this time.

              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


                #22
                Jer,
                I was also pointed to 'C' by a 'treat by numbers' general neurologist. But I wouldn't even try that DMT because I couldn't find a shred of info about using that drug to treat PPMS. I agreed to use Lemtrada when my current MS specialist strongly suggested that I try the drug. I don't know if my progression has been halted but I am feeling much better than I have felt in a long time.
                Good luck !

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