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Worried about being secondary

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    Worried about being secondary

    My left leg started "shocking" me six years ago when my younger son was born and has steadily gotten worse since then. Started with just some random shocks here and there to it happens every single day, almost constantly. Also, weakness started shortly after those initial shocks 6 years ago.

    At first I noticed that my foot started dragging slightly the more I walked to now I've been using a can for 3 years and I limp. Walking down stairs is a challenge, its like my leg doesn't know what to do and I've fallen a few times because my leg locks up or just messes up.

    I have hip pain and lower back pain from the imbalance of my movements. I can no longer run or jog like i used to, which I loved. Now just walking around the house is a chore. Makes me sad.

    I went on Gabapentin twice for the shocks and pain but it made me a complete zombie. So my neuro gave me Lyrica and thankfully that has silenced most of the shocks and pain. Theres still some but its a huge difference. Meanwhile, the weakness is getting worse. I feel like the decline in strength is moving faster all the time.

    So if I'm RRMS, then why has my leg been on a steady decline for 6 years? I thought I was supposed to have some sort of bounce back...but nope. I saw my neuro in January and she said she is concerned about the weakness and she noticed the difference from the last visit a year a go. So she gave me the lyrica then and is sending me for PT and will see me in 6 months.

    Needed to vent and see what all my fellow msers think. Thanks in advance. I feel like MS is good at making me feel alone.
    DX 2005 RRMS. Did 2nd round of Lemtrada Jan 2018. DX SPMS 2019

    Hi Starla.

    So if I'm RRMS, then why has my leg been on a steady decline for 6 years? I thought I was supposed to have some sort of bounce back...but nope.
    You have been diagnosed for 14 years (?). The longer a person has this disease the higher the possibility for progression. In the case of Relapsing/Remitting MS the natural progression is Secondary Progressive MS.

    The "bounce back" you are speaking of is usually related to exacerbations (relapse, attack, flare-up). An exacerbation can be complete (no symptoms) or partial (residual symptoms) with partial being the most common.

    Have you incorporated exercise into your daily life? I have always stressed the importance of exercise. I am glad your Neurologist has referred you to Physical Therapy(PT). Hopefully, over time you might see some improvements. you will have PT exercises that you can do at home and I would encourage you to continue those exercises long after PT ends.

    I have hip pain and lower back pain from the imbalance of my movements.
    Balancing out your ability to walk properly is something PT can help with and will include core strength exercises. One option that might be beneficial for you is to walk with a walker or my personal favorite is using Trekking Poles. A cane doesn't balance out your walking whereas a walker or Trekking pols will.

    Give PT a chance and see what your Neurologist thinks when you see him in 6 months.
    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


      It's great that you are going to start PT, Starla. I have been SP for about 10 years now...hard to remember, but about 6 years ago I did a couple months worth of PT and learned so much.

      I was using a cane then, but my gait was was off and legs were weak. During one PT session my physical therapist had me walk across a long room 3 times while he video taped my walking.

      One using my cane.
      One using trekking poles.
      One using a rollator walker.

      It was amazing watching the video of the difference between using the cane vs a walker! (trekking poles came in a close 2nd) My posture was better, my gait was smoother, balance was better and it took less precious energy. I was sold and I've been using a walker ever since. (When I go for short walks outside, I use my trekking poles)

      You might want to discuss using a walker with your PT. In any case, I hope PT helps you gain more strength and helps with your balance.

      You are not alone here! Please take care and come back to let us know how you're doing
      1st sx '89 Dx '99 w/RRMS - SP since 2010
      Administrator Message Boards/Moderator


        Thanks for the replies Seasha and Snoopy. Im now interested to try a walker or treking poles after both of your comments. Only makes sense that that would balance out my hips. Where as a cane is one sided.

        Im hoping I get into PT sooner rather than later. Im still waiting as it can be up to 3 months before the appointments start. Wasnt sure how PT could help as I was starting to feel hopeless, like I would never have a normal walk again but you both helped give me hope for some improvement. Thank you both!

        And yup 14 years since diagnosed. Had first symptoms in 1998 but wasn't figured out til 2005.
        DX 2005 RRMS. Did 2nd round of Lemtrada Jan 2018. DX SPMS 2019



          I'm just checking up on you. How is your MS going? Are you continuing to decline it have you stabilized somewhat?
          ~ Faith
          MSWorld Volunteer -- Moderator since JUN2012
          (now a Mimibug)

          Symptoms began in JAN02
          - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
          - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08

          - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
          - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.