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    #1

    An update

    So I have my follow up MRI this week. I will finally find out if I am truly cursed or if I was misdiagnosed. I am also asking for a second test for Lyme disease since looking at my tests they did they least accurate one. Although Lyme doesn’t sound fun at least there is hope for a future and a cure. At least hopefully by my 3 week October vacation I will know if I have a future or if I need to start working on my 28 thing bucket list. Thanks again for the few people who supported me and to the ones who had a problem with me refusing to be happy living with this curse… well you did at least make me realize certain things I was considering are the right thing if I am cursed.

    I’ll probably check back on this in the next few days since I doubt I will sleep much before that test…
    Tags: None
    #2
    Daisycat, wishing the best for you.

    Comment

      #3
      I'm so glad to see you back Daisycat. I am glad to hear some updates on how you're doing. Yes; please let us know your MRI results, and your Lyme disease test, if they do another one.

      Originally posted by Daisycat View Post
      ... Thanks again for the few people who supported me and to the ones who had a problem with me refusing to be happy living with this curse…
      I had to kind of laugh to myself at this, even though it's not actually funny. I might be in both categories. At least I hope that I supported you; I wanted to. But, I also hoped that you could find happiness in spite of MS. And, if remember, I also hoped that you could even find blessings.

      Grant me the serenity to accept the things I cannot change,
      the courage to change the things I can,
      and the wisdom to know the difference.
      ~ 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

        #4
        Hey daisy cat glad to hear from you!Good luck

        Comment

          #5
          daisycat, so glad you stopped back by. You are always welcome here at MS World and I hope you get some good results for the MRI. I understand where you are....this is a tough season for you and we have all been there in a variety of different ways. Sending good thtoughts your way! MGM

          Comment

            #6
            Hi Daisy~ good luck on your next appt. and hoping it's not MS or Lyme's. Keep us posted!
            1st sx '89 Dx '99 w/RRMS - SP since 2010
            Administrator Message Boards/Moderator

            Comment

              #7
              Hi Daisycat

              Wishing you the best ~ good luck!

              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

                #8
                I have REALLY thought about if I will be able to be happy with this and I just know that I can’t. I am not a big people person in the first place but the amount of loneliness that this has caused me is unbearable. I know a lot of this is my doing, but being around normal people makes me angry. I know no amount of time will ever change how I feel. I was thinking about this last week when I made my bucket list. I feel like I have lost everything… my future , friends, hope, dreams.



                I know there are people with this who are happy, but everyone is different and I know that I am not one of those people. It reminds me of how I knew 2 people from my high school that were diagnosed with cancer. (This has been over a 10 + year span). One suffered for YEARS doing all of the treatments and everything possible. She ended up dying alone in a hospital room. Her husband divorced her after a few years of her diagnosis. We were never that close and only occasionally kept up over the years on Face book or the random once a year call so I did not even know she had passed until a few months later.) Another one was diagnosed with stage 4 cancer. She quit her job the next day and went on a trip around the world with her husband and decided she didn’t want to go through Chemo or make her husband watch her suffer. She made a different choice about how she was going to die. My point is everyone reacts to things differently and I do not think either was wrong in what they did. I was actually good friends with the second one.



                My plan used to be paying off my student loan debt in 3-4 years. I was going to apply to sit for my test for my surgery specialty next year and try to get a job at a referral specialty center. I was going to work there for 10-15 or so years and save up money since I would have no debt. I was going to probably try to get an associate’s degree in business to help me open my animal rescue. After 10-15 years I was going to open my animal sanctuary… I cannot express how much it depresses me that I might now be able to do this now.



                If my dream of this being a misdiagnosis is crushed I am going to pay the minimum payment every month on my student loan debt and work on my bucket list. I guess at least I’ll have something to work for…. And I’ll do a lot of cool things that I would have never done if I hadn’t got this curse. (Bungee jumping and skydiving to name a few) I have 28 things on my bucket list so I’ll hopefully be able to finish it before this thing takes me mind. I was watching a show on Netflix last night and one of the characters ended up with Dementia… that is pretty much how I envision a life with this curse once it has progressed. I will not let myself get to that point.




                And as to why I don’t still try to do my old life dream – I don’t see the point. I am already defeated and depressed enough. Having it stolen from me a second time would destroy me.

                My MRI is tomorrow so hopefully I will get my results fast. Waiting on the results is terrible. That is one of the things that makes me fall down the rabbit hole of Dr google. I always start out with good intentions of trying to find things this could be instead but it ends in me reading about locked in syndrome and being convinced that will be me in 5 seconds... ( Not likely I know but I cannot help myself when it comes to Dr Google)

                Comment

                  #9
                  Best wishes in finding your future, your friends, your hopes and your dreams.
                  ~ 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

                    #10
                    Had my mri today... only thing my dr told me in a very rude and short response was “no active or new lesions”. Didn’t answer me about when I asked if there was any change to existing ones. I don’t think he understands what I do with the rest of my life depends on this and I’d like a quick answer so I can know if I can have a future or if I need to start my bucket list. On the plus side I can get the other 4-5 piercings I want now.

                    Comment

                      #11
                      Originally posted by Daisycat View Post
                      Had my mri today... only thing my dr told me in a very rude and short response was “no active or new lesions”. Didn’t answer me about when I asked if there was any change to existing ones. I don’t think he understands what I do with the rest of my life depends on this and I’d like a quick answer so I can know if I can have a future or if I need to start my bucket list. On the plus side I can get the other 4-5 piercings I want now.
                      Daisycat

                      Glad to hear that there are no active or new lesions on your MRI scan.

                      You sure got quick results!

                      Have fun with your new piercings.

                      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

                        #12
                        No active or new lesions. And no current symptoms?

                        Sounds like the news is good. :-)
                        ~ 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

                          #13
                          the only symptom I ever had was double vision one time. Nothing before and nothing since. So yeah I guess no new lesions or symptoms. He didn’t answer me if lesions can heal so idk about that

                          Comment

                            #14
                            Originally posted by Daisycat View Post
                            I’d like a quick answer
                            Waiting is really hard, I can sympathize. It sounds like good news. I am assuming you'll have a follow-up appointment with a neurologist, once he has had time to review the MRI results?

                            Comment

                              #15
                              confused...

                              Has the doctor said you have "MS" lesions? It sounds like you are pulling teeth to get the information you want from your doctor. I would make him go over your MRI with you, line by line, until you understand it. That is something I never had the guts to do, and wish I would have. Instead I would try to Google every medical term and figure it out by myself at home...like you said, going down that Google rabbit hole (without going to medical school first) can be really scary!

                              When is your next appointment? Before you go, you may want to ask for extra time as you have many questions, and you need more info than what you got the last time. I used to write down all my questions in advance. Do you bring an advocate with you (Your BF? Your father?) to your doctor appointments? I used to bring my husband with me.

                              Also, have you checked out the Limbolanders section here at MSW? I was first diagnosed with "Possible MS" after my first MRI.
                              Tawanda
                              ___________________________________________
                              Diagnosed with Multiple Sclerosis 2004; First sign of trouble: 1994

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