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Brand new and in the process of being diagnosed

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    Brand new and in the process of being diagnosed

    Hi! I’m Nick, I’m 35 and live in Melbourne Australia with my partner and 15 month old son.

    Recently I have had some vision issues that go beyond my normal eyesight problems that I wear glasses for. For about 3 weeks I had a really hard time reading anything. I went to an Opthamologist and my eyes were fine, so he referred me to an MRI.

    i hadn’t really linked the two things, but my partner mentioned some other problems I’d had (a recent week-long bout of vertigo, some bowel and bladder problems) and said it sounds similar to MS symptoms. After reading about it, I seemed to tick a lot of the boxes. My MRI was not very conclusive but did indicate possible demyelination. I went to a Neurologist who was super cool and understanding, and he agrees based on the scan and me explaining various symptoms I’ve had that MS seemed quite likely. As he put it, “if it looks like a duck and quacks like a duck, it’s probably a duck” (which I guess is some technical medical expression &#128516.

    Anywho, more tests to come and he says we should know for sure whether or not it’s MS in 6 weeks, but indicated it’s likely. To be honest, I’m worried that the tests will come back negative, which sounds so stupid (“yay I have MS!”), but I’ve just had such a history of problems both possibly related and likely unrelated not being identified with any certainty, leaving me with no answers. Never any terrible problems just little things here and there.

    So im really hoping for some answers, whatever they may be, if it turns out as an “hmmm nope dunno what that could be 🤷*♂️“ situation, I am liable to scream 😂

    Sorry for the long rant, but I’m really happy that there is a place to come to and talk. I’ve enjoyed reading about people’s stories in the short time I’ve been here and seeing how helpful everyone is.

    #2
    Welcome! Is your neurologist an MS specialist? There are lots of MS mimics they have to rule out (for example, my neuro ordered a ton of bloodwork).

    To be honest, I’m worried that the tests will come back negative, which sounds so stupid (“yay I have MS!”),
    I can totally relate to this! There's something about actually having answers even if it's not a great answer.

    Comment


      #3
      Hi Nick and welcome.

      Hope you get some definitive answers soon.

      Let us know what you find out, and how you're doing.

      Take Care
      PPMS for 26 years (dx 1998)
      ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

      Comment


        #4
        Originally posted by ElemteacherPK6 View Post
        Welcome! Is your neurologist an MS specialist? There are lots of MS mimics they have to rule out (for example, my neuro ordered a ton of bloodwork).
        Thank you

        yes he is an MS specialist, and I got about 8 vials of blood taken. One being sent to Denmark which made me feel very special lol. Also having some kind of eye exam and a spinal tap soon

        Comment


          #5
          Originally posted by Nicktimus View Post
          To be honest, I’m worried that the tests will come back negative, which sounds so stupid (“yay I have MS!”), but I’ve just had such a history of problems both possibly related and likely unrelated not being identified with any certainty, leaving me with no answers. Never any terrible problems just little things here and there.
          Actually, this doesn't sound "stupid" at all to me. As someone who was in limbo for quite awhile, I was relieved to receive an MS dx, because then I knew what was wrong and could begin treatment. It makes sense to me that you would wish for a quick dx without a long period of continued uncertainty.

          I hope you find some definitive answers soon.
          ~ 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


            #6
            Hi Nick.
            I'm sorry you're in this situation.
            I had similar symptoms and I even got the same duck statement from the first neurologist I saw. I'm not sure how helpful the duck lingo is. Must be something they teach in medical school!
            Good luck and please keep use posted.

            Comment


              #7
              hi Nick,
              I'm in CQld.
              Hope its not to cold yet way down south?

              Sorry you have to be here .
              did they say what the test sent overseas is for?
              I'm guessing the one they sent could be a JC Virus test. we don't have testing in Aus for this.
              I could be wrong but i just cant think of another test that needs to be sent OS.
              This test is required prior to possibly starting a treatment.

              sorry i don't mean to jump the gun or stress you out further.

              Unfortunately there are a lot of hoops to jump through and obscure maladies that can't seem to be explained with a few of CNS conditions. Most of us here have experienced frustration and some what bittersweet satisfaction at being told there's some reason for all the weirdness.
              You are still in your prime and the earlier you can sort out your treatment options (and there are quite a few nowadays) the better the prognosis for what ever docs determine ails you.

              So welcome, and feel free to share any time.

              Comment


                #8
                Hi Nick ! Welcome to the boards . The only advice that I have is for you to trust in your doctor's advice, avoid cigarettes, eat as healthy as possible and avoid stress ! Make sure that your vitamin D levels are close to the max ! In the U.S. the max, for me, is above 50 ng/Ml ! That level is good for me ! Good luck

                Comment


                  #9
                  Originally posted by Nicktimus View Post
                  So im really hoping for some answers, whatever they may be, if it turns out as an “hmmm nope dunno what that could be 🤷*♂️“ situation, I am liable to scream 😂


                  So glad you are ON THIS. I love the advice to - while you wait - just take care of yourself and take one step at a time. A DX would be extremely serious. But you’re right, it would be decisive. And either way, in your current condition you can still live a productive life by being honest with yourself about staying on top of your health.
                  All the best, ~G

                  Comment


                    #10
                    Thanks

                    Thank you all 😊

                    definitely taking my health seriously, I have been recently even beforehand but even moreso now. I’ve been eating well and going to the gym, gonna start yoga shortly too. I quit smoking years ago, I do vape nicotine but was thinking maybe I should quit. Most of the info I’ve found however says nicotine can be a positive for MS sufferers for sharpening up the mind s wee bit (as low ng as it’s not being delivered in a harmful way like smoking), will chat to my neuro about it. As for the vitamin D funnily enough I had my bloods done for unrelated reasons I recently and my levels were good for the first time in my life! So will try to keep that up.

                    had a bad day this week that I’m wondering whether it could have been an “MS day”, was home from work and more insanely tired than I ever have been and quite stiff too. There was a mild virus going around though so could be that, who knows!

                    next few weeks will be a bit of a stress as I wait for the next steps but I’m keeping positive, again thank you I appreciate your messages!

                    Comment


                      #11
                      Welcome

                      See if you can find the book called MS for Dummies. An excellent read.

                      You are always welcome to the chat on this site. The time difference may be an issue. Never hurts to try.
                      God Bless and have a good day, Mary

                      Comment


                        #12
                        Originally posted by Carolinemf View Post
                        hi Nick,
                        I'm in CQld.
                        Hope its not to cold yet way down south?

                        Sorry you have to be here .
                        did they say what the test sent overseas is for?
                        I'm guessing the one they sent could be a JC Virus test. we don't have testing in Aus for this.
                        I could be wrong but i just cant think of another test that needs to be sent OS.
                        This test is required prior to possibly starting a treatment.
                        Hey mate! Yeah it could well be that, I can’t remember specifically though. a number of the blood tests were to test for conditions that they have to know about before you start any kind of immune suppressing treatments so quite possibly

                        Comment

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