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    Progressive symptoms vs. Time

    I have been diagnosed with PPMS. At the onset of symptoms, there was only numbness in the left side of my face. They have steadily increased since April 2014 to include numbness, spasicity, weakness and twitches.

    However, one thing I'm curious about is a correlation between the progression of symptoms since April to where I am now and where I will be in a further 6 months. Let's take today as the benchmark of symptoms. I have had increased symptoms almost weekly since June. Last night, I developed a new twitch in my "good" arm.

    I understand there is no crystal ball, but if this is a progression of symptoms and I've progressed since June; shouldn't that correlate to severe or at least moderate disability in a further 6 months?

    #2
    Originally posted by truestory View Post
    I have been diagnosed with PPMS. At the onset of symptoms, there was only numbness in the left side of my face. They have steadily increased since April 2014 to include numbness, spasicity, weakness and twitches.

    However, one thing I'm curious about is a correlation between the progression of symptoms since April to where I am now and where I will be in a further 6 months. Let's take today as the benchmark of symptoms. I have had increased symptoms almost weekly since June. Last night, I developed a new twitch in my "good" arm.

    I understand there is no crystal ball, but if this is a progression of symptoms and I've progressed since June; shouldn't that correlate to severe or at least moderate disability in a further 6 months?
    I have PPMS and I think you are panicking a bit. I have had my rate of progression speed up and slow down before as well. I doubt you will be as bad as you think in just 6 months.

    I have probably had it 16 years and I have more symptoms then I can count but as yet I'm still walking. Don't give up and stay as active as you can, try to take your mind off it.

    Comment


      #3
      Originally posted by Dale76 View Post
      I have PPMS and I think you are panicking a bit. I have had my rate of progression speed up and slow down before as well. I doubt you will be as bad as you think in just 6 months.

      I have probably had it 16 years and I have more symptoms then I can count but as yet I'm still walking. Don't give up and stay as active as you can, try to take your mind off it.
      Ditto. Similar time in similar results.

      Diet and exercise have helped me feel better. Not right but better.
      Take care of yourself and try not to freak-out about weird things your body may or may not do. You will get better at dealing with it and it will become less terrifying.

      Hang in there...it gets easier to deal with as time goes by.

      Comment


        #4
        I agree with others here that it's not been a linear progression. I was diagnosed a in 2013, but like everyone always seems to say, I now realize that I've been having symptoms for a very long time, in my case about 14 years.

        I've never gotten better, just worse, but at a variable rate. I can still walk with a cane, but not more than a few minutes at a time without getting shaky. Probably none of that makes you feel better, but tommylee is right that you get better at dealing with it. I guess it's kind of like when you lose someone you love.

        Good luck and remember that there are lots of people here who understand.
        PPMS
        Dx 07/13

        Comment


          #5
          I have two echo the first two posters. I was diagnosed (PPMS) in 2001, and for the last two years my symptoms have only gotten slightly worse. But there have also been times when the progression was quick. Each individual`s MS is different, and your progression could stop tomorrow. I know it is easy for me to say because it is not "my" MS. Quit worrying about what MIGHT happen tomorrow, the more you were thinking of tomorrow, the more you miss of today and once it is gone you cannot get it back.
          hunterd/HuntOP/Dave
          volunteer
          MS World
          hunterd@msworld.org
          PPMS DX 2001

          "ADAPT AND OVERCOME" - MY COUSIN

          Comment


            #6
            So, it sounds like "you get use to it" the twitches and the numbness. But how does a spouse get use to it?

            Comment


              #7
              I too was just recently diagnosed with PPMS. Official diagnosis Oct. 2014, however as many others have stated, looking back I have had symptoms dating back to my 20's. I am spastic..I twitch...I have pain..unsteady gait....fatigue....you name it. However it does vary from day to day. I find this disease to be an emotional roller coaster. I have a good day and I am sure I am going to make it....have a bad day and my life is over. No matter how bad it gets I still try and do everything I can to make myself feel better...diet...exercise and etc. I ultimately take one day at a time with this.

              As far as your spouse getting used to it? I am not sure that they can...just as I will never likely get used to this disease. I guess me and my significant other are just taking things one day at a time and hoping for the best. I luckily have a fantastic guy who helps me in anyway that he can. I am a very lucky girl, but do realize not everyone is as fortunate.

              I am just glad to have found this board as it has made me feel less "alone" knowing that others understand my plight.

              Looks like there are also many of us on here from the great state of Colorado. I guess it is too late for me to get the benefit of living south of the equator

              I wish you all the best!

              Beth

              Comment


                #8
                Originally posted by colobro View Post
                So, it sounds like "you get use to it" the twitches and the numbness. But how does a spouse get use to it?
                Mine could not come to grips with it... now we are working on a divorce.
                Just the way it goes some of the time.

                Comment


                  #9
                  That's so sad, tommylee. Dealing with a divorce as well as MS is a real kick in the pants. I hope things start to seem better for you soon.

                  Comment


                    #10
                    Originally posted by tommylee View Post
                    Mine could not come to grips with it... now we are working on a divorce.
                    Just the way it goes some of the time.
                    Been there. My ex didn't understand anything about MS thought I was dying and bailed. Turned out to be the best thing that happen to me. I didn't need the stress.

                    Comment


                      #11
                      Just me

                      I hate not knowing what I'll be able to do an hour from now or what symptoms will be worse at a given time. Knowing I need to do things now, but not knowing if I can. MS means wasting so much time on the demands of life, not enjoying it. Trying to do things you have to do, when you can do them and not doing things you had planned. Mind is working? Do tasks requiring focus. Remember something you need to do? Drop what you're doing to do that instead. Feel you have more mobility today? Get out and do running around. Never knowing what tomorrow holds. Trying not to let it run your life, but not left with many options. I hate asking others to give up their life to help manage mine. They may be in my situation next and I don't want them missing out on life for me.

                      From my perspective things are progressing fast. Life falls further behind. You give up so much trying to keep up. Makes me wonder why we, as humans, make life so complex. I try not to think about how bad it will get.

                      Comment


                        #12
                        Originally posted by truestory View Post
                        I have been diagnosed with PPMS. At the onset of symptoms, there was only numbness in the left side of my face. They have steadily increased since April 2014 to include numbness, spasicity, weakness and twitches.

                        However, one thing I'm curious about is a correlation between the progression of symptoms since April to where I am now and where I will be in a further 6 months. Let's take today as the benchmark of symptoms. I have had increased symptoms almost weekly since June. Last night, I developed a new twitch in my "good" arm.

                        I understand there is no crystal ball, but if this is a progression of symptoms and I've progressed since June; shouldn't that correlate to severe or at least moderate disability in a further 6 months?
                        Hi truestory

                        If you look at this increasing disability / time chart for PPMS on the National MS Society website, you will see that some persons with PPMS may experience occasional plateaus and also temporary minor improvements.

                        http://www.nationalmssociety.org/What-is-MS/Types-of-MS

                        Fortunately, that has been the case for me.
                        PPMS for 22 years (dx 1998)
                        ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

                        Comment


                          #13
                          question

                          Did you guys always know you had PPMS instead of RRMS? I'm not officially diagnosed but I'm seriously considering going back to the dr just for my own mind's sake. I don't seem to fit the RRMS description and seem to fit PPMS more accurately. I'd love to hear your stories on how your diagnosis came to be and the progression of your MS. What has been said here sounds like me and I want to be able to talk to my dr (neuro) about how I think it's PPMS.
                          Thank you.

                          Not officially diagnosed due to non-MS-specific spots on MRIs, but the neurologists all agree it's MS.
                          Frustrated. January 2019: finally saw an MS specialist worth seeing. Maybe we'll get to the bottom of this.
                          EDSS of 5.5, sometimes 6.0

                          Comment


                            #14
                            Originally posted by jjs View Post
                            Did you guys always know you had PPMS instead of RRMS?
                            Hi jjs

                            I was dx'd PPMS from the beginning. In fact, at my second opinion at the Mellen Center for MS at Cleveland Clinic, the neuros said that I was easy to diagnose.

                            My symptoms all started out gradually, insidiously, and wouldn't happen all the time at first. Didn't go to the doctor for awhile, since it all seemed so vague and the symptoms didn't all begin at the same time.

                            Early symptoms - during the course of about a year:

                            My right arm would get unusually tired at work.

                            At times my gait would be off - with a slight limp after walking awhile (coworkers would ask if my knee hurt, but no pain).

                            I began having urinary frequency and urgency, on occasion.

                            Sometimes I would trip while walking.

                            After a hot shower, or being in the hot sun, I experienced weakness.

                            When I looked down, I sometimes felt a buzzing, tingle down my back and legs.

                            I became easily fatigued from doing normal activities.

                            I started having difficulty with finger dexterity, like putting coins in the vending machine, or putting my pierced earrings in my earlobes.

                            Difficulty lifting my right leg into passenger side of car - (this one got me to the doctor).

                            These were the earliest symptoms that I recall. They were all very gradual - no sudden event happened, which I think is how a relapse usually happens.

                            Any more questions, just ask and I'll try to help if I can.

                            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


                              #15
                              Originally posted by KoKo View Post
                              Hi jjs

                              I was dx'd PPMS from the beginning. In fact, at my second oinion at the Mellen Center for MS at Cleveland Clinic, the neuros said that I was easy to diagnose.

                              My symptoms all started out gradually, insidiously, and wouldn't happen all the time at first. Didn't go to the doctor for awhile, since it all seemed so vague and the symptoms didn't all begin at the same time.

                              Early symptoms - during the course of about a year:

                              My right arm would get unusually tired at work.

                              At times my gait would be off - with a slight limp after walking awhile (coworkers would ask if my knee hurt, but no pain).

                              I began having urinary frequency and urgency, on occasion.

                              Sometimes I would trip while walking.

                              After a hot shower, or being in the hot sun, I experienced weakness.

                              When I looked down, I sometimes felt a buzzing, tingle down my back and legs.

                              I became easily fatigued from doing normal activities.

                              I started having difficulty with finger dexterity, like putting coins in the vending machine, or putting my pierced earrings in my earlobes.

                              Difficulty lifting my right leg into passenger side of car - (this one got me to the doctor).

                              These were the earliest symptoms that I recall. They were all very gradual - no sudden event happened, which I think is how a relapse usually happens.

                              Any more questions, just ask and I'll try to help if I can.

                              Take Care
                              That sounds a lot like what I'm going through except there have been times of sudden issues. Looking back now, I'm not sure if the sudden issues were true relapses or pseudo. Things always get a lot worse when my work load or stress load is too high. What's too high? Sometimes it's hard to know until it's too late. I used to be so strong and capable. Now I cannot commit to anything - and I really mean that. There's absolutely no way I could have a job. I'm doing all I can to keep up with regular house work and my chores, and sometimes not even that (like tonight my daughter has to do my chores because I cannot walk - I knew I was having issues today because of recent stress so I took it easy all day until this afternoon. I thought I had rested and was well enough to make a batch of soap but I was so wrong!!!!).
                              After I knew the drs were saying MS, I was able to look back over the years and see that a few issues I had for several years were getting worse and are MS. Like my feet hurting ... so bad they feel like they should explode. This started in my early twenties I think. And extreme fatigue for no apparent reason - after doing normal things. I used to think it was blood sugar issues but now I know it's not.

                              Anyway, there's never really been a break. Never a time since the symptoms became obvious that I thought, "Hey, I feel like my old self again!" So for the last 5 or 6 years I just get worse. BUT within the last year I have felt "better" - but I honestly think it's because I have finally learned (for the most part!) how to manage things and have cut my schedule and responsibilities down to nearly nothing and have a backup plan (I have THE BEST support system). I am no longer expecting to go back to my old self. My right side will never get better. My face, hand, arm, leg and foot will always be weak and tire quickly. My memory will always be bad. My feet will always hurt. My speach will always decline when I'm tired. And so on. This is me ... and I'm getting worse, not better ... and that's ok.

                              Rambling but just needing to talk right now I guess.

                              Is that place in Cleveland the best? How do you get an appointment there?

                              Not officially diagnosed due to non-MS-specific spots on MRIs, but the neurologists all agree it's MS.
                              Frustrated. January 2019: finally saw an MS specialist worth seeing. Maybe we'll get to the bottom of this.
                              EDSS of 5.5, sometimes 6.0

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