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Re-introducing myself; back after a few years!

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    Re-introducing myself; back after a few years!

    Hi everyone,

    A little bit about myself; Dx with MS in 2010 after a episode of vertigo, dizziness and problems speaking or as my doctor called it "speech arrest." After lots of tests, spinal tap and MRI I was finally dx 3 months later with MS and was told that I probably had it since 2000, but never knew it!

    I was given tegretol which immediately cured the "speech arrest" and also started copaxone. I actually read about tegretol in a thread here; I'm so thankful and wish I could remember who wrote about it!

    So, the past 8 years have been fairly uneventful. Taking the copaxone and getting yearly MRI's which have always been stable with no changes. Until a month ago when I started having vision problems. I was having some blurry vision and a bit of double vision; so I ran to my optometrist. She checked my optic nerve and said it was 100% fine; but did see some weakness in the muscles on the sides of my eyes. She said to see if it gets better or worse and come back if worse. Of course my neurologist was away so I couldn't see him. The nurse suggested I see an ophthalmologist there instead of my optometrist to get another opinion. He said the same thing. So, back to my optometrist for a third time, she said it's probably Internuclear Opthalmoplesia and she ordered an MRI.

    So, I go for the MRI with and without the contrast, and it comes back showing a couple of new, active lesions. This is what's causing my vision problems. I go see my neuro who immediately orders Solu-medrol for 3 days and prednisone for 10 days. He tells me to stop the copaxone, and I'm going to start Tysabri. i went for the blood test for the JC virus, so if it comes back negative, I'll begin the Tysabri asap. I'm on day 2 of the Solu-medrol and am seeing a bit of an improvement.

    It's just so upsetting to have been stable for 8 years and then to be hit with this! I'm so glad to have this site to come to; I was on here when I was first dx and then just lurking occasionally. Honestly, it made me upset and scared to read all about the "bad things" and I didn't have much experience to be able to offer advice or help!

    Thanks again for this wonderful site :-)

    #2
    Welcome back!

    Agree with you, the site is a great resource ESPECIALLY when we have crisis moments...it’s a great relief to find knowledge and learn from others’ experiences.

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      #3
      Hi Jillmich,

      I am surprised you have no been referred to a Neuro-Ophthalmologist to determine if it is truly Internuclear Ophthalmoplegia (INO) or not. I hope IVSM resolves your INO but if you are still having problems prisms might be helpful.

      Having an exacerbation after so many years can be very frustrating
      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

      Comment


        #4
        Hello Jillmich,

        I am sorry you are having such a tough time lately, bless your heart, how disappointing to get hit like this after being stable for so long. There are better days ahead!

        The solumedrol will likely help a great deal, especially with your vision issues. I saw you had a bunch of great responses to your solumedrol post!


        I wanted to comment on your neuro's choice of DMT's and say that I agree 100% with choosing Tysabri. My spouse began taking natalizumab (Tysabri) in 2002 and was virtually MS free until 2017 when she switched from Tysabri to Ocrevus due to her concerns about PML.

        Ocrevus is a very good medicine. Tysabri is a great medicine. Both are substantially more effective in trials and real world experience than the 3 orals or any of the early MS meds (CRAB). You can learn a great deal about all of the MS DMTs at this site, and I am sure you are educating yourself about Tysabri since your doctor mentioned it.

        I believe your neuro has you headed in the right direction.

        Best of luck to you!

        Comment


          #5
          Originally posted by SNOOPY View Post
          Hi Jillmich,

          I am surprised you have no been referred to a Neuro-Ophthalmologist to determine if it is truly Internuclear Ophthalmoplegia (INO) or not. I hope IVSM resolves your INO but if you are still having problems prisms might be helpful.

          Having an exacerbation after so many years can be very frustrating
          Hi Snoopy,

          Yes, I was referred to a Neuro-Opthamologist. Unfortunately, he is so busy that I have to wait till February for an appointment! I was also referred to an optometric physician who specializes in vision therapy and vision rehab; and can do the prisms if necessary. I had my MRI and report sent to him and I'm going there next week.

          Thanks so much!

          Comment

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