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Newly Re-diagnosed......

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    Newly Re-diagnosed......

    Good Morning,

    I saw my neurologist yesterday and he has decided that I do indeed have diagnoses of MS, even though my disease has been atypical and confusing. I was originally diagnosed in 2004 and then the undiagnosed in 2005. For the last 15 years, I was in diagnostic limbo and carried the diagnosis of Demyelinating Disease of the CNS.

    Wow, I do not really know how I feel about it. Talk about an emotional roller coaster ride! Just three months ago, he insisted that it wasn't MS and by giving me the diagnosis, he would be be doing a great disservice. He felt that my medical team would stop looking for what was the actual diagnosis. My case is complex because I have Behcet's Disease with Neuro-Behcet's that can mimic MS brain/spine lesions but is a vasculitis. He did say having the diagnosis would make it easier for me to get insurance approval for MRI's and Rituximab. He has had to fight to get these approved every time, often with a peer to peer review.

    My treatment plan won't change and I am scheduled for 2 more doses of Rituximab this month. He is thrilled with my response to the Rituximab despite having a breakthrough relapse 6 weeks after my initial dosing last November. My neuro exam remains very abnormal and my recovery from the optic neuritis has been disappointing but my MRI is better. I will continue to be positive and do everything I can to be as well as I can. Despite all my challenges, I'm happy that I am still able to work part-time even if it exhausting.

    I'm thankful for this board and the opportunity to share our experiences and symptoms. Have a great day!

    #2
    Dear polopuppy,
    I empathize with your suffering, but I hope your clearer diagnosis leads to even better and more accessible care. I am glad you find the Message Boards here useful. Good luck and

    Stay lifted,
    Mermaid Susan
    "Life is short, and we have but little time to gladden the hearts of those who travel with us; so let us be swift to love, and make haste to be kind."
-Henri Amiel

    Comment


      #3
      Hi polopuppy

      You sure have been on a rollercoaster ride, with confusing and complex issues. I admire your courage through it all.

      Originally posted by polopuppy View Post
      My treatment plan won't change and I am scheduled for 2 more doses of Rituximab this month. He is thrilled with my response to the Rituximab despite having a breakthrough relapse 6 weeks after my initial dosing last November. My neuro exam remains very abnormal and my recovery from the optic neuritis has been disappointing but my MRI is better. I will continue to be positive and do everything I can to be as well as I can. Despite all my challenges, I'm happy that I am still able to work part-time even if it exhausting.
      Glad to know that you're having a good response to treatment.

      Your attitude is amazing!

      Originally posted by polopuppy View Post
      I'm thankful for this board and the opportunity to share our experiences and symptoms. Have a great day!
      We appreciate your sharing with us!

      Please continue to let us know how you are doing.

      Wishing you the best.

      Take Care
      PPMS for 22 years (dx 1998)
      ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

      Comment


        #4
        Hi polopuppy,
        I have read all of the responses . Are you being treated by an MS specialist ? Have you had you vitamin D levels checked in a lab? I know that it took a while for my MS diagnosis !
        When I started to ask my doctor about my vitamin D levels, he found that I was at around 19 and I felt awful ! My levels are around 50, now. I still have MS but I am sure that my body chemistry is better and I feel a little better ! Good luck

        Comment


          #5
          Thank you, Susan, Koko and Jerry for your kind responses and support.

          To Jerry, I am being treated by a very experienced MS Specialist/Neuro-Immunolgist at a large teaching hospital. My doctors have been following my Vitamin D levels for years and they were once very, very low and are now better but still low. My dose of Replesta has been recently increased to 3 wafers a week. I only absorb the water soluble form of Vitamin D for some reason and had no response to the standard fat soluble form. My last Vitamin D level was 26 and we are aiming for > 50. I appreciate your suggestions and I, too, feel that Vitamin D is very important.

          Have a great day. I'm home sick with a bad case of strep throat but I think the antibiotics are starting to kick in.

          Comment


            #6
            Originally posted by polopuppy View Post
            I'm home sick with a bad case of strep throat but I think the antibiotics are starting to kick in.
            polopuppy ~

            Oh darn - sorry to learn that you are sick with strep throat.

            When I had strep, the antibiotics were very effective in a short time. Hopefully you will have good results also.

            Get well soon!

            Take Care
            PPMS for 22 years (dx 1998)
            ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

            Comment


              #7
              Thanks, Koko! Unfortunately, I'm still sick and my strep throat turned into pneumonia. I am having a terrible time trying to fight it, despite two different antibiotics. And, to add insult to injury, I developed about 6 cold sores on my upper lip yesterday. I suppose the Rituximab has really affected my immune system because I have had one illness after another since I started it. I am supposed to fly to Maui tomorrow and I'm hoping I'll be well enough to mange the trip.

              Comment


                #8
                Originally posted by polopuppy View Post
                Thanks, Koko! Unfortunately, I'm still sick and my strep throat turned into pneumonia. I am having a terrible time trying to fight it, despite two different antibiotics. And, to add insult to injury, I developed about 6 cold sores on my upper lip yesterday. I suppose the Rituximab has really affected my immune system because I have had one illness after another since I started it. I am supposed to fly to Maui tomorrow and I'm hoping I'll be well enough to mange the trip.
                polopuppy

                Sorry to hear that you got pneumonia (and cold sores) following your bout with strep throat.

                It's too bad if the Rituximab has compromised your ability to fight off illnesses. I wonder what, if anything, could help with that.

                Were you well enough to go to Maui? Hope so!

                Let us know how you're doing, when you can.

                Take Care
                PPMS for 22 years (dx 1998)
                ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

                Comment

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