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    PPMS'ers status

    hello to all, I was just wondering how many of us with PPMS are on this board.

    I would also like to know what stage of progression we are all in, I'll start right now:

    I have had PPMS, with no remissions, since 1986. I am currently unable to use my arms, hands, legs or feet. My head works just fine.

    I did have Optic Neurtious early on but it didn't affect my vision much after it went away. So far my speech is good, but at times, lately, I have bouts where my voice is too weak and people say "speak louder" , this is the first symptom I've had in years that his new.

    I am fortunate because I live in a wonderful nursing home and have a wonderful insurance carrier that has given me an electric wheelchair, etc.

    I realize I am one of the few that has progressed this far and can still communicate on this board, but I thought I'd reach out and see if I'm right, hoping I'm wrong.

    #2
    fourtimer,
    I am also a PPMSer, diagnosed in 2010. I am progressing much faster than I am comfortable with. You should read on the 'Medications and treatments' forum about Ocrelizumab. It sounds like it may be the way to go. My brain is like 'mashed potatoes' so I don't always make sense when I post. Keep posting ! Good luck

    Comment


      #3
      Hello fourtimer

      Sounds like you have had MS for quite awhile now (almost 30 years?). I'm sorry to learn that you are unable to use your arms and legs. Hopefully you have good, kind people to help you at the nursing home. Glad to know that you have an electric wheelchair to get around in.

      I've had PPMS since 1998 (17 years).

      There has been steady progression, with some plateau times.

      I have very limited movement on my right side arm/hand and leg/foot (hemiplegia). My left leg is very weak. Thank goodness my left arm and hand are still somewhat functional.

      I am able to stand with a walker, and take a few steps at times.

      Weak voice after talking awhile. Swallowing is troublesome at times.

      Anyways, I'm grateful to be living in my apartment. And I thank my lucky stars that my sister comes over to help me with things.
      PPMS for 22 years (dx 1998)
      ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

      Comment


        #4
        hello Jerry D, sorry that I gave up on drugs long time ago, sure hope they work for others.

        KoKo, yes I am treated really well at this hospital. I have everything I could ever need and the nurses are great. I only left home because I was living with my daughter and I wanted her to start your own life. She fought me but she's happy now!she sees how great it is up here and she can visit any time day or night.

        Comment


          #5
          Originally posted by fourtimer View Post

          KoKo, yes I am treated really well at this hospital. I have everything I could ever need and the nurses are great. I only left home because I was living with my daughter and I wanted her to start your own life. She fought me but she's happy now!she sees how great it is up here and she can visit any time day or night.
          Good for you! (And your daughter too!)
          PPMS for 22 years (dx 1998)
          ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

          Comment


            #6
            PPMS

            PPMS since 2013. Recently had to stop working - I am still dealing with this. Just wish I could slow or stop the progression.
            Mary

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              #7
              Hi Mary

              It sure is tough having MS, and then having to retire from work due to MS really stinks. I feel for you going through that loss.

              For me, work became so exhausting that I felt much better physically and mentally when I did retire
              (much less income, though, but I'm making it ok with SSDI).

              Let's hope for a good treatment to be discovered soon. In the meantime, we can hope for long plateau times, as PPMS can and often does have plateaus.

              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


                #8
                I was diagnosed with RRMS in 2006, but since I've never had a relapse I was "upgraded" to PPMS two years ago. I am on SSDI, but I am VERY blessed because my disabilities are still minimal I walk with a cane but don't need it all the time. Memory and concentration problems, weakness in arms and right leg, EXTREME fatigue. I take Methotrexate weekly. It seems I'm always waiting on the other shoe to drop.
                Donna K: dx RRMS 12/07. Rebif 2/08 - 3/09, Tysabri 3/09 - 7/12, ended due to JCV+. Betasaron 8/12 - present
                Filed for SSDI 8/12. Approved 11/12
                dx PPMS 7/13. Added Metotrexate 2.5 mgx3 to Beteseron. Stopped all meds 3/14 to quality for ibudilast clinical trial for PPMS

                Comment


                  #9
                  Hi Donna

                  Sorry about your "upgrade". Sounds like you are maintaining with a good attitude, though.

                  I'm glad for you that you are walking.

                  This may be for the medications thread, but I'll ask here.

                  What is it like for you taking Methotrexate? Weekly infusion? Side effects?

                  Thanks.

                  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


                    #10
                    thank you for checking in, dck696 and Mary 615.

                    Mary, the only way I know of to slow the progression is to eliminate stress from your life.
                    That is easier said than done.

                    Comment


                      #11
                      I take oral Methotrexate, a low dose. Four pills a week, one day a week. I'd say there are no side effects, but right now I'm having tenderness in my ribs and what feels like my kidneys and I'm wondering if there is a connection. But otherwise, I feel nothing from it--no benefits.
                      Donna K: dx RRMS 12/07. Rebif 2/08 - 3/09, Tysabri 3/09 - 7/12, ended due to JCV+. Betasaron 8/12 - present
                      Filed for SSDI 8/12. Approved 11/12
                      dx PPMS 7/13. Added Metotrexate 2.5 mgx3 to Beteseron. Stopped all meds 3/14 to quality for ibudilast clinical trial for PPMS

                      Comment


                        #12
                        Originally posted by dck696 View Post
                        I take oral Methotrexate, a low dose. Four pills a week, one day a week. I'd say there are no side effects, but right now I'm having tenderness in my ribs and what feels like my kidneys and I'm wondering if there is a connection. But otherwise, I feel nothing from it--no benefits.
                        Ok - thanks for response on Methotrexate. Too bad no benefits, but thought I'd ask.

                        Hopefully the tenderness you're experiencing is just a passing symptom, and goes away soon!

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

                        Comment


                          #13
                          My Status

                          Hello Fourtimer,

                          On a bright, clear September morning in 2004. I went out for a training run to prepare for what would've been my first marathon. I was 56 years old. After about 12 steps or so, my left foot began to drag on the ground. I remember about 10 attempts to run; all ending the same way. More than a year and two neurologists later, I was diagnosed with MS in December of 2005 at age 57. At first, my diagnosis was RRMS. I finally wised up and started using an MS Center listed on the NMSS website.

                          In 2007 my diagnosis became PPMS. Since then, my route has been a cane, then a cane and a portable scooter for amusement parks & zoos, followed by a cane and a heavier duty scooter with a lift in our van for distances over 200 yards or so, then a four-footed cane and the scooter for distances over 100 yards, now a walker in the house and the scooter most of the time outside the house. At the moment Iím considering a power wheelchair for both indoor and outdoor use.

                          So far, I am blessed with slow progression.

                          As obvious as my mobility issues are, my two most bothersome symptoms are fatigue (the reason I stopped working in August of 2011) and neuropathic pain in the very lower portion of my spine. Those two symptoms have been pretty constant since 2006. Neurotin keeps the pain between a 5 to 7 on the 10 point pain scale. I tried Provigil for fatigue, but stopped taking it because I didn't care for the side effects.

                          The plus side is that I attend most of my grandchildrenís events and enjoy family get-togethers when and wherever I can (even if I have to take a nap during some of them).
                          Jim DX RRMS Dec-2005, PPMS Jul-2007

                          Comment


                            #14
                            Very mild symptoms appeared about 2000, but really starting ramping up in 2009, and I was finally diagnosed in 2013. Can still walk with a cane for short distances, rollator for longer. Getting my first motorized mobility device this week. Hands are going a little numb but function is luckily still about 80%. And I still work at a desk job.

                            I have been taking high dose biotin for about 10 months, but haven't seen any evidence of benefit. I will definitely look into ocrilizumab when it comes to market.

                            So dck696, did you wind up being in the ibulast trial?
                            PPMS
                            Dx 07/13

                            Comment


                              #15
                              Fourtimer ! Hey you been through it all man and I just want to tell you that you have got my respect !! I'm 57 now been diagnosed 12 years all most and been sliding down about twice as fast as old age would take me. Need a cane or a stick on uneven ground now and walk like a drunk sailor on flat good ground. I mean I was a drunken sailor for a lot of my life so it don't matter. Well it does I'm lying.

                              Wishing you all the best !

                              Richard.
                              It was one agains't 2.5million toughest one we ever fought.

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