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    New here not sure I belong here

    Been lurking on these boards on and off for about a year. I was “diagnosed” st party’s day of 2018. I went out, got very drunk, fell and hit my head, and had an MRI. Long story short they saw lesions and had me come back for lots of other testing and it was decided I had this. There’s a post in the general boards that goes into more detail.

    Not even sure I really belong here since I’ve never had any issues or problems from this disease. I’m still convinced I was misdiagnosed and it’s all just a scam to keep them free from a lawsuit lol.

    anyway I’m a licensed head surgery technician at a surgery specialty center. I love my job and the thought of having to quit on day because of this kills me.

    not much else going on in my life because well you know corona ruined everything. But if it wasn’t for corona I was going to be obsessed with disturbed and go see them at least 4 times this summer. Then I had a bunch of other things lined up. Now all I do is play video games with my husband. At least it wasn’t the ms that took away my ability to go to concerts, not that corona is exactly my idea of a dream world.

    #2
    I'd say welcome but it's not really a club you WANT to join. I understand how you feel. I was diagnosed march of 2018 as well. I lost feeling in half my body that kept getting worse. Went for my MRI and discovered I had a few lesions. When i went for follow up MRI in december i thought for sure they were going to tell me i was misdiagnosed and i'd walk out with 8 months worth of fear and worry. Instead i was told i had more lesions.

    Besides that episode in March of 2018 which took about a month to recover from i've had no major episodes. However i live with fatigue daily. It's my worst symptom. Also when i get over heated i can tell i need to chill out and relax.

    2 and half years in and i feel as i don't belong in the MS group because i'm "new" and i don't have the same experience. However i've also read a lot which has helped on the journey. Not sure i ever want to feel like a "veteran" of this but i feel as if i don't belong in the "I HAVE MS I"M STRONG" club since i don't have the experience as others but i do remind myself it is something i am dealing with. i'm just lucky to be in the spot i am right now with that i am. I don't take that for granted.
    Best of luck. Did you get a follow up MRI since that would have confirmed? Did you go on any treatments? I'm on my second (mostly because the first just wasn't working for me lifestyle wise).
    Dx March 2018; possible first episode: August 2011
    Tysabri May 2018-June 2019, Mayzent July 2019

    Comment


      #3
      I’ve had two follow up mris and both showed the same with no changes at all. They did a spinal tap to confirm it, but I really can’t think of anything symptom wise I have.

      I honestly some days forget I even “have” this since the only change I made was I stopped smoking cigarettes for the most part. My husband has to remind me some days to use my injection because I honestly don’t think about this since it still doesn’t seem real. I’ve read about something called beign ms and it says the person never has issues or may only have one flare ever, but it can’t be diagnosed that way until at least a decade or more has passed.

      I still honestly think that I was misdiagnosed but I don’t know what else it could even be since they ruled out a bunch of other things.

      Comment


        #4
        It looks like you've had an MRI and a lumbar puncture. Is your doctor a neurologist? Or an MS specialist?

        Yes; those are both tests that help to dx MS. And rulig out many other copycat illnesses (differential diagnosis) is als o a regular piece of the diagnostic process.

        I'm glad to hear that you are not experiencing symptoms. I encourage healthy eating, moderate and regular exercise, stress management (meditation, yoga, positive relationships, meditation, etc .

        ~ 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


          #5
          The doctor I was seeing was a neurologist and ms was listed as one of the things they specialized in. They retired and since I am not comfortable going to a drs office ( corona) I don't have a new one yet. I have enough medicine refills to last me until July of next year, and I am also not planning to get another MRI so I am OK not going to the DR. I don't need to perform things that make me feel like I just got pulled over for a DWI. (Walk straight , how many fingers am I holding up , touch your nose).

          Now that we have finally got our spare bedroom back , I plan to order a treadmill and some weights. I miss working out , but again (corona) so I am not going to a gym anytime soon. Hopefully this virus will go away soon and we can all get back to our lives.

          Comment


            #6
            Just my two cents. I would want the MRI to make sure no new lesions and confirm your DMT choice is keeping you stable. You can develop lesions without knowing you are in a relapse, which it seems was the case for you - how your injury led to your MS diagnosis without you having any symptoms. There are theories that the early lesion development is what may lead to later, long term symptoms.

            Healthcare offices make alot of effort to keep everyone safe. I would be more afraid of MS progression than an MRI or doctor's visit during covid-19.

            That being said it is your choice and your risk tolerance. I just wanted to make sure you were aware of the risk.

            Glad you will be able to exercise at home. It is so good for the body and the mind. Enjoy it!
            Kathy
            DX 01/06, currently on Tysabri

            Comment


              #7
              I’m personally ok not knowing there’s progression. I honestly wouldn’t be able to handle it. I mean I’m not changing to one of the drugs that causes immune suppression and a lot of other ones either seem like I would have terrible side effects or not much help paying for it.

              I’m perfectly ok living the next however long I have with no issues in peace. I’d rather have 10-15 years where I’m happy and enjoying myself vs 20-30 years where I’m a miserable and lonely person.

              I know some people feel different, but I can’t be happy if I know there’s progression. To me once I reach the point of not being able to get up and go to work every day and I’m no longer able to take care of myself without help, well I’ll just say I don’t want to live knowing that days coming any second. I’ll go with my last 2 mris have been stable and that’s good enough for me right now.

              I appreciate your opinion though.

              Comment


                #8
                I think mind set it is huge, especially in the beginning. Being newly dx (well in my opinion 2 years is still new to the game) i can tell you i felt like i didn't want to know. I didn't want to research, i didn't want to think of the "what ifs" and i didn't want to think that life would be over some day. Yes at first i asked my spouse if he wanted out in case the future was dim but he thought i was crazy. I was told to stay positive because mind set will affect me physically.

                I think we are lucky (go ahead and laugh) that we are diagnosed today. There are so many treatment, options, opportunities and hope for our future. It's good to know if you have it and if there is any progression so you can adjust medication as needed. Yes MRI's suck. I had three in my first year because i did have progression and i did try treatments that we weren't sure were working. After you get stable you don't need them as often and it gives you a timeline. My MRI days=Me days. Whatever i want that day i do. Starbucks, junk food, go where i want and do what i want. It's my way to bribe myself to do it. At the end of the day I know it's important to know if i have more lesions or not so i can ensure i'm taking the right medication to not face set backs in 20-30 years. We are lucky enough to possibly even have a cure one day or at least advancement in medications where we may never experience the physical declines.

                I hope some day you will be open to embracing this part of your life and learning that it doesn't define or control you. You can be informed and yet live a normal life. Stay positive and hopeful because we have a light out there that we need to keep looking towards!
                Dx March 2018; possible first episode: August 2011
                Tysabri May 2018-June 2019, Mayzent July 2019

                Comment


                  #9
                  Jennaly16 - Glad to see you are doing well. Two years is still newly diagnosed. You seem to be in good place accepting your diagnosis and integrating it into your life. Really glad to hear. It takes both time and effort to get there.

                  My infusion days are similar to your MRI days. Lunch is whatever I want. Then I curl up and read, listen to music, and nap. As you said, my reward day.

                  Love your last sentence. "Stay positive and hopeful because we have a light out there that we need to keep looking towards!" I am going to put that in a quote journal I keep. Thanks for the inspiration.
                  Kathy
                  DX 01/06, currently on Tysabri

                  Comment


                    #10
                    Originally posted by pennstater View Post
                    J Two years is still newly diagnosed.
                    Really? Two years? I didn't know that!

                    "Stay positive and hopeful because we have a light out there that we need to keep looking towards!"
                    Lovely quote. Thanks for sharing.

                    Comment


                      #11
                      I very much look up to everyone in these blogs as all have given guidance or have enlightened me of what MS is. I love reading through and seeing experiences, especially knowing all experiences are varied.

                      I owe a cousin for keeping the mindset straight. She was diagnosed 17 years ago with MS. Growing up i never knew what it was nor did i pay attention (she's actually my mom's first cousin). The day i was diagnosed she called me and gave me advice. Her and her husband brought me flowers, had dinner with me and spoke very bluntly about what MS is to each of them and how it affected each of their lives. Her positivity gave me no other option but to be positive.

                      Thank you all for being there for people like me. new and wanting to soak up as much actual life experience as possible (and not read what Web MD or Google has to say).
                      Dx March 2018; possible first episode: August 2011
                      Tysabri May 2018-June 2019, Mayzent July 2019

                      Comment


                        #12
                        Originally posted by Pistachio View Post

                        Really? Two years? I didn't know that!
                        My first neuro told me that based on his experience, on average, it takes two years for people to fully adjust to a new MS diagnosis. It was pretty much spot on for me. The first year, I had lots of ups and downs, by 18 months had
                        come to terms with it, and by 2 years, felt like my old self mentally - MS was just another part of life. That's not to say I haven't had to make adjustments over time. But that is part of life, MS or not.
                        Kathy
                        DX 01/06, currently on Tysabri

                        Comment


                          #13
                          [QUOTE=Jennaly16;n508047

                          I hope some day you will be open to embracing this part of your life and learning that it doesn't define or control you. You can be informed and yet live a normal life. Stay positive and hopeful because we have a light out there that we need to keep looking towards! [/QUOTE]

                          I don’t want to know if there’s progression. My marriage, job, and liver would not survive. When/if ithappens I’ll make the choice of what to do. Until then I’m making the most of my life... well until corona took that away.

                          Comment


                            #14
                            Originally posted by pennstater View Post

                            My first neuro told me that based on his experience, on average, it takes two years for people to fully adjust to a new MS diagnosis. It was pretty much spot on for me. The first year, I had lots of ups and downs, by 18 months had
                            come to terms with it, and by 2 years, felt like my old self mentally - MS was just another part of life. That's not to say I haven't had to make adjustments over time. But that is part of life, MS or not.
                            I’m pretty sure I’ll never accept it. To me it’s basically something I never think about except to when I take my medicine. This will never be a part of my life. My real life and that life are separate. I lived that life and I was waking up still drunk and on the verge of divorce.

                            I’ll take live life as I want and go to all the concerts, events, and conversations I can because I could die tomorrow

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