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Initial Symptoms of Primary Progressive

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    Initial Symptoms of Primary Progressive

    Hi, I am currently in the process of being dx for MS (possibly PPMS due to my age - 57). Can you explain what symptoms initially brought you to a doctor. Thanks.

    #2
    I'm also 57 (at least for a few more weeks) and have PPMS. I started going to neurologists about five years ago for neuropathic foot pain and weakness in my legs. I was finally diagnosed in August of 2013. After repeatedly asking "are you sure it's not MS?" And being repeatedly told "Oh no, you don't have that!"

    Good luck. I hope you don't have it, but if you're anything like me, you might be relieved to finally know that your problems are caused by a "real" disease.
    PPMS
    Dx 07/13

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      #3
      Mine was right foot drop and (right sided) hemiparesis in 2009. The neuro at the time diagnosed me with ADEM even though there was no episode (just a history of vaccinations two years prior).

      Anyhoo, I was properly diagnosed with PPMS by an MS neuro in December 2012.

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        #4
        Sorry, I hit submit too quickly.

        I hope you get some news soon, but I hope that it is something better than PPMS, but it really sucks.

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          #5
          HUsband's ppms started with tingling in his right big toe
          (1995) which progressed to weakness in his right leg - by 2003 was using a cane, then two canes and by 2010 wheelchair-bound. He still has some use of his upper body but needs help with all ADLs and can't be left alone.

          It does suck, but especially for him.

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            #6
            Oh yes, to be more specific:

            - January 2009: symptoms
            - July 2009: cane and AFO
            - November 2013: rollator

            I will likely need a scooter by the end of the year.

            Like I said, PPMS sucks.

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              #7
              Guess I could have been more specific too--Sx became troublesome around 2009 (but like people say, now that I think back, it was much longer ago). Currently I use a cane for safety outdoors, but can walk short distances (< .25 mile) unassisted if I'm not fatigued. Upper body fairly unaffected yet.
              PPMS
              Dx 07/13

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                #8
                I am 68 and just received a definite dx of ppms. My symptoms started maybe 10-12 years ago.

                My left foot/leg was weak and has gotten weaker over the years; my left arm is now weak and so is my right side but much less so.

                Over the years I had a few falls but for the past year fell more often and broke bones/rib. Obviously my balance and gait has gotten worse over the years.

                I also experienced various urinary problems -- frequency, urgency, failure to empty my bladder -- these have also progressed over the years.

                This past spring I experienced slurred speech, inability to finish sentences or find the correct word (ordinary words like chair, book, etc) to express what I wanted to say, and failure to concentrate. As a retired librarian and avid reader, I was unable to read a book -- couldn't retain enough to understand the plot.

                It was all of these symptoms, especially the falling and cognitive ones that sent me to a dr.
                PPMS: Dx 9/13 by local neurologist; confirmed by 2 ms specialists in fall/winter 2013-14.
                Meds: Rapaflo, Neurontin, multi-vitamin, calcium, baby aspirin, blood pressure medicine. The list keeps increasing as the neuro tackles each symptom.

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                  #9
                  left leg dragging, started after a long walk which became increasingly shorter walks

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                    #10
                    Hello New to MS and welcome to MSWorld

                    You posted this question almost 3 months ago so I don't know if you are still reading MSW or not but I would like to answer your question.

                    I do not have Primary Progressive MS (PPMS). I was diagnosed with Relapsing/Remitting MS(RRMS) and transitioned last year to Secondary Progressive MS(SPMS) without progression.

                    Although I had RRMS at the time of diagnosis my symptoms were quite severe:

                    - Bi-lateral leg weakness
                    - Barely able to walk
                    - Lhermittes
                    - Severe fatigue
                    - Severe pain
                    - Hand tremors
                    - Buzzing/vibrations from the waist down
                    - Pins and needles from the waist down

                    The type of MS is not determined by symptoms but by how the disease behaves.

                    If you will scroll down through the link below you will run across the types of MS which will give some basics about the different types.
                    http://www.nationalmssociety.org/Abo...MS-the-Disease

                    Although there are "types" of MS there can be variations within those "types."
                    Diagnosed 1984
                    “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

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                      #11
                      hi,

                      for me it was years of weird issues, that i ignored and just put on too much work and i'm just tired..

                      severe vertigo, blurred vision most of the time, foot drop, spatial issues, severe burning pain in legs at night, weak arms, weak legs,

                      you get the idea..

                      dx in 2011 with rrms, now i'm secondary progressive..yet the dr won't officially diagnose on paper, just says it ;0

                      i'm now on tysabri to kick ms butt!!
                      Jen Dx'd 5/11
                      "Live each day as if it were your last"

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                        #12
                        I was diagnosed with RRMS in 2006. I am now 54, and have never had the first exasperation, so I have now been changed to PPMS.
                        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

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