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    #1

    How long have I had this?

    I was wondering if anyone believes they had this disease for decades before being diagnosed? If I really look back over the past 25 years, I can say that I have had many symptoms which were just overlooked by myself and physicians. I had a doctor suggest it about 10 years ago and he asked me to follow his finger with my eyes. (That was his test for MS) He then told me I was fine because my eyes would have gone in different directions if I had it.

    If anyone has a similar story I would love to hear it. I am wondering how this is going to effect my prognosis, even though I realize there is no crystal ball.
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    #2
    The only source I've found for prognosis is a variety of blog postings at the ms research blog, published by a neurologist in London. You will have to dig through a lot of material, but it's there if you want to look. It doesn't change the fundamental uncertainty. He reports statistical analysis based on large populations of people. There is no way to know where any of us fall within that population. But I like to know what's typical.

    I can look back in my life and see symptoms long before I was diagnosed. You're not alone.

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      #3
      I wonder the samething. I was just diagnosised a year ago but I had 11 lesions at the time of my MRI 3 were enhanced causing a bad flare and the rest were not so they happened sometime before that flare.

      Looking back, 10 years ago, in college I had symptoms but never saw the doctor about it. Who knows how long I've had it?

      I do wonder if I had been on a DMD 10 years ago maybe my last flare wouldn't have happened or wouldn't have been as bad. I also worry about that 10 years until SPMS thing. I try not to dwel on it too much because it just depresses me.

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        #4
        Many people with this disease come to realize they have had it much longer than their actual diagnosis date. It's really not uncommon.

        It is quite easy to ignore or write off many things that may have occurred.

        When I was diagnosed at the age of 24 and started reading about MS it explained quite a lot about symptoms I had as a kid and I had an ahha moment.

        It doesn't change anything, not even my prognosis, but it makes sense out of many things I experienced as a kid.
        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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          #5
          54 years later!

          My first episode was at age 12 in 1960. I was paralyzed down my left arm, leg & diaphragm. Never recovered everything back. Back then to get dx, you were put in a tub of hot water. If you could get out without help, you did not have MS. But if you could not get out, you had MS.

          Everyday with MS is an adventure. Wake up & check each body part to see if it is working. Then go on about your day as best you can.

          I went to college, got married, had 3 kids & now have 7 grandkids & am retired living a pretty good life. Live everyday as if it was your last.

          KK

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            #6
            Frustrating

            Thank you for your responses.

            It is amazing to me how much of a mystery this disease still is. It has been around for a very long time. It also is scary how many more people are being diagnosed daily.

            I try and tell myself once I get on some sort of medication things will go back to normal, at least for a little while.

            I will look up the information provided. I appreciate it!

            Comment

              #7
              Medication will hopefully slow things down for future and symptom treating meds can help you feel better if needed, depending on the problem. Heat sensitivity can be managed in a variety of ways.

              The next few months will likely tell how much you get back of what you've currently lost. Welcome to Wonderland. The Lewis Caroll, not the Disney version. Or the Twilight Zone if you prefer that reference.

              Comment

                #8
                I think probably so. I was nine when I had a terrible dose of glandular fever. They thought I had leukaemia. I can remember wringing my hands, and they were like skeleton hands, all bones. Never cracked on, really, after that.

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                  #9
                  Originally posted by SNOOPY View Post
                  When I was diagnosed at the age of 24 and started reading about MS it explained quite a lot about symptoms I had as a kid and I had an ahha moment.

                  It doesn't change anything, not even my prognosis, but it makes sense out of many things I experienced as a kid.
                  I would say this applied to me, only I've read that juvenile cases have moderate intellectual impairment-unless I was supposed to be working at Lockheed Martin's Skunkworks and this is the dumber version of myself. That's a depressing thought. : P

                  Comment

                    #10
                    Originally posted by dyin_myelin View Post
                    I would say this applied to me, only I've read that juvenile cases have moderate intellectual impairment-unless I was supposed to be working at Lockheed Martin's Skunkworks and this is the dumber version of myself. That's a depressing thought. : P
                    Hi dyin_myelin,

                    Unfortunately, children can have any of the symptoms that come with this disease be it cognitive, sensory, mobility, ect.

                    My symptoms as a child included:
                    - leg weakness even though I was solid muscle (riding a bike was difficult and I was not able to keep up with my friends.

                    - Poor balance, which I still have.

                    - Unable to walk a straight line. I would always walk into
                    friends and family. I still can't walk a straight line

                    - leg pains that that happened long after 'growing pains' time frame. These pains/aches are what I have experienced before and after diagnosis.

                    - heat intolerance. By the time I was in my early teens I could not be in the sun/heat very long. If I did, I needed to take a nap. This one certainly messed with my social life

                    - Falling/tripping which I never outgrew. I met my husband when I was 18 years old and on our second date I tripped and fell wearing a dress, hose, and heels Well, he got to see what he was getting before he got it

                    - We went shopping one day and my leg went out from under me as I stepped off the curb. I didn't trip or step on anything, my leg just gave out.

                    - Believe it or not he married me and after almost 33 years of marriage and almost knowing each other for 35 years we are still together

                    BTW - I gave up heels years ago and probably should never have worn them even as a teenager.

                    - sensory (feeling like I was leaking urine but I was dry). This last one resurfaced several years ago and was confirmed as a MS (sensory) symptom.
                    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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