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    How fast does it happen?

    How sudden is the loss of mobility? Do you wake up one morning and a leg doesn't work, or is it gradual where you just get weaker and weaker?

    Thanks,
    Lori


    40 years old, Dx RRMS Jan. 2017

    #2
    Hi Lashrew and welcome to MSWorld.

    Each person has their own unique journey with this disease. As far as mobility; Some have mobility problems from the beginning, some never have mobility problems, and others are somewhere in between.

    One of the best things you can do is not compare your MS with someone else's. Exercise of some sort on a regular basis can be quite important to retaining strength, endurance, and balance. Exercise is also helpful for some symptoms such as pain, spasticity, and fatigue.
    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

    Comment


      #3
      I was diagnosed with Primary Progressive MS at 53. For me it’s been a gradual steady process of declining muscle strength. On the other hand, a friend with RRMS woke up one morning unable to move her legs. It was an exacerbation, and she recovered but not completely. She uses a cane and is a little slower.

      Only 12% Of MS patients in a recent study by the NMSS were using a wheelchair or scooter. So don’t assume that’s where you’re going to wind up.

      There is no way to know what the path of your MS will take. I think the uncertainty is one of the hardest things to deal with early on. It is certainly a stressor, which doesn’t help.

      When I was diagnosed, the Neuro to me to go and live my life. Take the meds, exercise and eat healthy, and try to minimize stress in your life. Easy to say, not so much to do.

      Comment


        #4
        Anxiety

        I'm newly dx, been 5 months or so. At dx time I ended up in a wheelchair for a couple days and I hated it!!!

        i went from wheelchair, to walker, to cane and now I'm running on a treadmill and doing yoga and weight training. My recovery is going so well I'm pleased and have made this my new lifestyle. I'm religiously eating right and never, ever miss a dose of tecfidera.

        my initial thoughts were insane and had a high level of anxiety but it's getting better with meditation.

        i too am constantly haunted by my first exacerbation and constantly fear the unknown, being an active male (sports, jogging etc..) i can't stand the thought of being in a wheelchair again. It's a thought I'm gonna have to live with unfortunately 😕

        NMSS stat of %12 ending up in a wheelchair makes the odds so minimal that this will even happen to me and maybe the successful use of DMD's will even lower that number I could be walking withou any aid for a long time, I only notice myself getting stronger and fatigue is no longer present anymore from my daily excersize routine. I have lots of energy from the nutritional content of my food.

        Im trying to keep my MS at bay and live my life.

        Comment


          #5
          My journey started with a slight limp and progressed to becoming weaker over time.
          I am now to the point I am on disability and spend most of my time in a wheelchair or a recliner.
          My initial diagnosis was PPMS and this has been a 10 year progression to-date.

          Comment


            #6
            My dx

            My dx was RRMS... I forgot to mention that srry, my neuro thinks I'm on my what to a %90 recovery😊

            Comment


              #7
              My initial diagnosis was PPMS.

              My journey started 18 years ago with a slight tingling in my toe and progressed to becoming weaker over time.
              I stopped working in 2017 and on disability now.

              I spend most of my time in a power scooter 😡

              Comment


                #8
                My initial dx was RRMS; it started 16 years ago, at the age of 39. Used mobility devices, occasionally, when in a flare in those early years. Sometimes, during flares, yes -- I would wake up one morning and I couldn't walk right. But, it would get better when the flare would go into remission. At least, partially better.

                During the past 5 years or so, I have much less stamina for walking than I used to. Even during my years with MS, there were a lot of years when I could walk about a mile, or for about 20 minutes. I have used a W/C occasionally -- for airports, zoos, museums, etc -- when there would be a lot of walking involved, for a number of years.

                Now, I am 55. I went on disability (SSDI) 10 years ago. I used to volunteer 10 or 15 hours a week, various places in my community. I do much, much less of that now. When walking, I tire after 2 blocks. My gait has changed. I have less emotional energy. I'm currently "in the gray area" between RRMS and SPMS.

                I've recently started using a cane when I leave the house. I could still get by without it. But, it helps me, so I've decided that, maybe, it's time.

                I still exercise, as I'm able. My exercise goals include averaging 2000 steps per day and "exercising" a little (wellness center, a Silver Sneakers class, some PT exercises at home, etc) 4x per week. Some weeks, I succeed at my exercise goals. Some weeks, I don't. My MS Specialist believes that regular exercise is important for delaying continued progression.
                ~ 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.

                Comment


                  #9
                  Really mobile after 21 years

                  I was diagnosed 10 years ago, and have not had any exacerbations since. I do have some issues with balance in challenging situations (figure skating, walking on poorly cleaned Minnesota sidewalks in the winter, standing on the affected side after waking up in the middle of the night or when I have a fever). And that diagnosis came 11 years after what turned out to be the first exacerbation.

                  I certainly understand how fortunate I have been, and that I'm not at all average in disease progression, but I'm also not completely unique.

                  Comment


                    #10
                    Hi Lashrew, I am glad to post my short answer to your question. Short answer-- Too fast! MS is incredibly individual and devastatingly debilitating!

                    I began my MS misery in 2009. I spent 2009 trying to find out why I was incredibly fatigued after my workday ended. I noticed that the toe section on the top of my right work boot was unusually scuffed up. I consulted my PCP who was not very thorogh but did a Lyme Disease test and suggested that I take 1000 iu. Vit. D. After a couple of months, I found I had very little improvement in my fatigue level. I saw my PCP about 10 more visits and, finally, I told the doctor that I need to see some kind of specialist ! He told me to see a neurologist, but didn't recommend one.

                    I found a local neurologist whose office was nearby my workplace. This process took the better part of 2009. This doctor sent me to get a couple of MRI's and after another 5 or 6 months, I was able to get an appointment to be examined by Dr. Clyde Markowitz, one of Philadelphia's Top Docs. He is one of the co-directors of the MS clinic at the Hospital of the University of Pennsylvania, a real big deal!

                    Since then I have lost the ability to walk. I use a power wheelchair, all of the time. I walked across the Brooklyn Bridge in the spring of 2010, with a cane ! I can't do that anymore. I changed neurologists 3 times and I see a certified MS specialist, currently.

                    It's been a tough journey! There is no recovery from MS, even if some people think they are going to recover ! People do recover from flares, if only partially . I hope you find a pleasant way to navigate this miserable path. Find a MS specialist and consult with him/her regularly. Good luck!!

                    Comment


                      #11
                      Originally posted by Lashrew View Post
                      How sudden is the loss of mobility? Do you wake up one morning and a leg doesn't work, or is it gradual where you just get weaker and weaker?

                      Thanks,
                      Lori


                      40 years old, Dx RRMS Jan. 2017
                      I was diagnosed in 2005. I stopped working in 2011, and on disability in 2013. My MRI's have stayed the same since 2007. I use a cane in the house, I use a rollator occasionally and I use a mobility scooter for travel and in large venues. Main issue is with right foot and ankle. The mobility issue began in 2012. I am thankful that I have no other issues. My med is Avonex. I never rest easy because I know anything can happen at any time. I enjoy myself; I try not to dwell on what I can't do and focus on what I can do. Everyone is definitely different though.

                      Comment


                        #12
                        Hang in there!

                        I am 64 years old, DX RRMS June 1994.

                        I was a heavy smoker and quit cold turkey six months after my dx of MS.

                        I started on beta seron, after a few years switched to copaxone, then I was on Tysabri for five years, and currently am on a pill: Gilenya for the past 2-3 years.

                        In 1995, I started working out in a gym and after 18 months actually RAN a 10K just to prove to myself i was not finished with life. I am not a big fan of working out but I do the Silver Sneakers thing and walk a few times a week.

                        I do not have the stamina now that I had in my 40's but that is MS + AGE.

                        I was laid off in 2007 along with most of my company in 2007. I worked other jobs with increased pressure, responsibility, and tension along with LOWER pay. It finally got so I could not work a regular full time job and went on SSDI about three years ago.

                        Everyone's MS is different, but I was able to work for over two decades after my DX. I can still walk one to five miles depending on the day, but my legs are rubbery when I stop. So good luck and hang in there!

                        Memphis Slim

                        Originally posted by Lashrew View Post
                        How sudden is the loss of mobility? Do you wake up one morning and a leg doesn't work, or is it gradual where you just get weaker and weaker?

                        Thanks,
                        Lori


                        40 years old, Dx RRMS Jan. 2017

                        Comment

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