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    Looking for ppl like me

    This was started to see how newly dx people are doing now.

    im newly dx as of sept. 2017 with RRMS and recovered to %90, im on tecfidera right now and have not had any new relapse activity since dx flare just remittance. Just hope I stay this way for a very, very, very long time.

    is there anyone who has been dx within the last 5-10 years and doing really good?

    Wat were you initial sx?
    how many flares have you been through?
    wat was dx year?
    wat DMD are you taking or switched from in the past?

    just curious as to see the prognosis for newly dx patients (5-10 years).

    so it is entirely possible to live near normal or normal life with MS?

    #2
    Another important question would be how long someone had symptoms prior to diagnosis and if a DMT was started soon after diagnosis? Studies show the sooner diagnosed and started on a DMT, the better prognosis.

    I hope you get responses. I just wanted to point out one thing so that you don't get discouraged by either lack of response or by content.

    I have noticed that people sailing thru without problems are usually not too active on the board. It is usually when people have concerns that they become more active.

    There are lots of people active at diagnosis, then they disappear. Some may be reading still, others, totally drop off, some to reappear when a relapse or progression.

    I know myself, I would check in once in awhile when things were "normal" in life. But I became more active once I began to progress some, and even more so when I stopped working. I now have the time available to check in frequently.
    Kathy
    DX 01/06, currently on Tysabri

    Comment


      #3
      Ant1981,

      I'm following this thread because I seek the same answers you do! I was diagnosed in February of this year and have since started Ocrevus. I woke one day with a leg that was completely numb. I couldn't drive for three weeks. After an array of testing, I was DX with MS, sought a second opinion at Cleveland Clinic, and am currently under their care.

      I have one lesion on my T-spine and several on my brain. Not sure this is relevant, but if I recall correctly, my EDSS score after relapse was 2.5.

      I take Gabapentin and Cymbalta for nerve pain, Provigil for fatigue, and just started PT to build back some strength and balance. (Incidentally, I had super low Vitamin D, so I take that every evening as well! My husband gives me B12 injections at home too.) I recently started yoga and I think that has helped in lots of ways.

      The only "significant problems" now are the fatigue, the sometimes nasty burning pain in my upper right thigh and shoulder, and a medium sized black floater in my right eye.

      I had big issues with stairs, and that is MUCH improved. The numbness in my leg has almost completely gone away.

      Looking forward to reading what others post! Thanks for starting this thread!
      DX 3/2018; started Ocrevus 3/30/18 (EDSS 2.5)

      "Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day."
      - 2 Corinthians 4:16

      Comment


        #4
        20 and I Uh think I’m normal?

        I was dx when I was 16 so I don’t really know a life that doesn’t have MRI’s, blood tests and medications. But I will say that everyone I’ve talked to with MS experiences different obstacles in living with it.

        For me I get up early to run, I cook, I take some college classes, I dance, paint, write, work, hang out with friends, read. Read a lot.

        But with my some of my symptoms I prefer not to drive alone so I just have a permit. I don’t like to stay out late, but that could also just be my introverted personality. And if I get sick I will often, lose my balance easily, drag my left foot while running and get insomnia.

        It is possible to live a relatively normal life with MS. The important part is being patient with the parts of your life that can’t always be normal.

        I hope you get lucky and have few obstacles in your journey,

        Spot
        Gatitude can transform common days into Thanksgivings, turn routine jobs into joy, and change ordinary opportunities into blessings." - William Arthur Ward.

        Comment


          #5
          Thanks

          Originally posted by smalltowngirl View Post
          Ant1981,

          I'm following this thread because I seek the same answers you do! I was diagnosed in February of this year and have since started Ocrevus. I woke one day with a leg that was completely numb. I couldn't drive for three weeks. After an array of testing, I was DX with MS, sought a second opinion at Cleveland Clinic, and am currently under their care.

          I have one lesion on my T-spine and several on my brain. Not sure this is relevant, but if I recall correctly, my EDSS score after relapse was 2.5.

          I take Gabapentin and Cymbalta for nerve pain, Provigil for fatigue, and just started PT to build back some strength and balance. (Incidentally, I had super low Vitamin D, so I take that every evening as well! My husband gives me B12 injections at home too.) I recently started yoga and I think that has helped in lots of ways.

          The only "significant problems" now are the fatigue, the sometimes nasty burning pain in my upper right thigh and shoulder, and a medium sized black floater in my right eye.

          I had big issues with stairs, and that is MUCH improved. The numbness in my leg has almost completely gone away.

          Looking forward to reading what others post! Thanks for starting this thread!
          Appreciate your responses, a few more details of my dx, I caught a bad flu, then had wierd sx that progressively got worse as the 1 lesion on my pons (midbrain) kept enlarging, that explains the multitude of sx:

          balance difficulties, left face partially numb, right arm/flank partially numb, Lower right leg numbness...with paralyzed right ankle and toes at the peak of the flare, also ear ringing slightly, double vision, motor function/gait disturbances, fine motor skills disturbances (couldn't write my own name) bladder retention and decreased capacity, constipation.

          All of which returned back to normal months after around January 2018, flare started in sept. 2017.

          Im running now and back to almost everything that I used to do which is crazy. Just wanna stay like this

          I love reading about others experience gives me insight to the diversity of this disease.

          keep those replies coming

          Comment


            #6
            I was diagnosed back in 2012 after going blind in one eye. After a round of Solu-Medrol infusions I got my eyesight back. My neurologist wanted to start me on Copaxone, but I was resistant and deathly afraid of having to give myself injections. So I went a whole year without any treatment (probably wasn’t the smartest move on my part).

            Once Tecfidera came out, I started on it right away. It was a rough start there for about a month due to the side effects (stomach issues and flushing) and just getting used to the medication. I’ve been on Tecfidera ever since and no longer have any side effects except for maybe some mild flushing which I don’t even notice anymore. I’ve also had zero relapses since diagnosis and no new lesions on the brain or spine. I feel lucky that the first treatment I’ve tried has worked so well for me. Hopefully this “luck” will continue.

            Looking forward to reading others responses.



            “Keep your face to the sun and you will never see the shadows.”
            ― Helen Keller

            Comment


              #7
              What were you initial sx?
              Right-sided foot drop, electric shocks right armpit/L'hermittes, bladder issues, visual field disturbances, dysphagia, language processing issues, chest pains, pain lower right side.

              how many flares have you been through?
              One was enough!

              wat was dx year?
              May 2013.

              wat DMD are you taking or switched from in the past?
              Started off on Tysbari, staggered Tec with trying to conceive, still take it but not 100% compliant (miss doses here and there).

              Comment


                #8
                Hi Ant

                I had a severe relapse in february,a lesion on brainstem .Now its almost good,i still feel some symptoms though

                I have the same questions,i think i have read everything possible on the net(research,forums all lol) and the prognosis for ms is in my opinion good.The research they have is mostly of people who used no medications and there only 10% had to use a wheelchair after 10 years with all forms of ms and 25% after 20 years.Today with good DMDs i think the statistics look much better

                Comment


                  #9
                  Researching

                  Originally posted by Medina89 View Post
                  Hi Ant

                  I had a severe relapse in february,a lesion on brainstem .Now its almost good,i still feel some symptoms though

                  I have the same questions,i think i have read everything possible on the net(research,forums all lol) and the prognosis for ms is in my opinion good.The research they have is mostly of people who used no medications and there only 10% had to use a wheelchair after 10 years with all forms of ms and 25% after 20 years.Today with good DMDs i think the statistics look much better
                  oh yes, the research I did was consuming me in the early months but since that October I've been recovering to %90. Feeling great, the only sx leftover are a tiny partial numbness on face and right fingers. Everything else has returned to normal. Good to see that the prognosis is good. Being in a wheelchair was my fear but likely that will never come to me or cane for that matter, with the medicines available and new research ongoing I think I'm gonna be alright,didn't think that way im Oct. 2017 that's for sure.

                  thanks for your replies.

                  Comment

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