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    Hello, again

    Hi, I wanted to reintroduce myself. I had a previous MS diagnosis back in 2004-2005. It was revoked in 2005, when I was suspected to have CNS vasculitis. I was treated with IV steroids for flares and then started on IVIG in 2011. The IVIG seemed to stabilize whatever it was that was causing my neurological disease.

    In 2015, I suffered anaphylaxis during my IVIG infusion and ended up hospitalized for 6 days. I was then started on plaquenil for a presumed MCTD diagnosis. In 2016, I switched neurologists and she began to suspect Neuro-Behcet's disease. I was started on Imuran

    I was diagnosed with Behcet's Disease in May 2017. In October of last year, I began having several falls. In January 2018, I developed severe ptosis and was thought to have a Myasthenia Gravis.

    I underwent tons of testing and retesting where I was found to have several large lessons on my frontal lobes and more Oligoclonal bands in my CSF. At this time, I began to suspect MS again but was reassured that it was not. I continued to have worsening neurological symptoms and underwent frequent brain and spine imaging. There were new lesions (mostly enhancing) on each MRI. The June MRI showed lesions in my T-spine which was the first time spinal lesions have appeared. In early September, I was taken off Imuran for treatment failure with the plan to start Rituxumab.

    In mid September, I developed acute optic neuritis in my left eye that was quite severe. I received high dose IV steroids and then an oral taper for 13 days. My optic neuritis has not improved.

    I was started on Clemastine to try to help the optic neuritis even though it is still in research testing. I will finally get my first dose of Rituxumab in 2 weeks. The Rituxumab start was delayed because I needed multiple vaccines first and a month to make antibodies to the vaccines

    My neurologist is still not calling this MS but says it is "MS like" or on the MS spectrum. My course, presentation, enhancement pattern, lesion size etc, are all atypical and that is what is preventing an actual diagnosis.

    So for the time being, I sort of have MS so I am coming back to join you all to give and receive support. Thanks!

    #2
    Hi polo puppy.

    Nice to see you again but sorry for the reason. Man! You have been through a lot. Have you stayed with the same Neurologist? Had a second opinion? Take care.
    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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      #3
      Thanks for the welcome, Snoopy.

      I had the same neurologist for 12 years but saw other neurologists during that time for 2nd opinions. I then went to a private neurologist, that I loved, but she closed her practice after one year. She had sent me up to UCSF to see a very good neuro-immunologist and rheumatologist. The UCSF neurologist is my current neurologist.

      I also see a neurologist at Stanford that manages my complex migraines and another neurologist that treats my dysautonomia and sleep apnea. I have many trying to manage my case.

      Thanks again and I'll see you around the board.

      Comment


        #4
        Hi polopuppy

        Welcome back!

        Sorry to learn that you've been put through the wringer for the past several years.

        Hopefully things will stabilize for you!

        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


          #5
          Welcome polopuppy.

          Sorry to hear of your journey that brought you back. It seems like you have been thru an awful lot. Glad to hear you have confidence in your current neuro situation.
          Kathy
          DX 01/06, currently on Tysabri

          Comment


            #6
            Welcome back polopuppy,

            Sorry you've had a tough time for all these years. You must be frustrated, but glad to hear you have a team working with you. Hope things can turn around.

            Take care!
            1st sx '89 Dx '99 w/RRMS - SP since 2010
            Administrator Message Boards/Moderator

            Comment


              #7
              Thank you KoKo, Kathy and Seasha for the warm welcomes. It has been a very frustrating 14 years but I've tried my best to keep moving forward.

              I'm a currently on medical leave because of this last flare but hopeful that I can return in the next month or so. Time will tell, I suppose. My doctors think Rituxumab will be my saving Grace so I hope they are right!

              I hope you all have a wonderful day.

              Comment


                #8
                Yes; welcome back. I think you'll find that, even if what you're experiencing isn't identified fir sure as MS, that we'll be able to identify with many of your feelings.
                ~ 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


                  #9
                  Originally posted by polopuppy View Post
                  I was started on Clemastine to try to help the optic neuritis even though it is still in research testing. I will finally get my first dose of Rituxumab in 2 weeks. The Rituxumab start was delayed because I needed multiple vaccines first and a month to make antibodies to the vaccines

                  My neurologist is still not calling this MS but says it is "MS like" or on the MS spectrum. My course, presentation, enhancement pattern, lesion size etc, are all atypical and that is what is preventing an actual diagnosis.

                  So for the time being, I sort of have MS so I am coming back to join you all to give and receive support. Thanks!
                  What an amazing journey polopuppy. Now that you are starting treatment, I hope that your health improves soon. Will be watching for updates.
                  All the best, ~G

                  Comment


                    #10
                    Thanks for welcoming me back, Faith and Gargantua. Yes, it has been a long journey and it isn't over yet. I hope that there will be a definite name for what ails me, at some point.

                    I will definitely add updates as my treatments progress. I am nervous about the Rituxumab but excited that it is finally happening after months in the works.

                    Have a relaxing weekend.

                    Comment


                      #11
                      Originally posted by polopuppy View Post
                      I am nervous about the Rituxumab but excited that it is finally happening after months in the works.
                      I so understand. Getting on a DMT seems to take a long time in many cases, and during that time we're learning and making hard decisions. I hope you report back.
                      All the best, ~G

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