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    Limbo

    I’ve been looking around this site for a while now, looking for answers, but everyone’s story is different. A bit about me...... I’ll try to keep it short.

    Oct 17 I experienced pain and blurry vision in my left eye. I went to my doctor expecting to get some magic eye drops, or something to fix my eye. Boy was I wrong. I was imeadiatly sent to an ophthalmologist. After a few hours of testing, I was referred for a brain MRI. At this stage I had no idea what they were looking for.

    Fast forward a couple of weeks. I received a call from the ophthalmologist, he informed me that I had optic neuritis and that I’d been referred to a neurologist for iv steroid treatment. I had no clue what that meant, or what was going on, as all the big words and medical terminology made no sense to me.

    A few days later I received a phone call from my local hospitals MS nurse.... that’s when the penny dropped!!! MS, why is an MS nurse calling me? I went in to a tail spin of shock I think. The next day I started a 3 day course 1000 mg IV steroids.

    That was only the start. A few days later, I had intense tingling and numbness down my left side. After looking at other symptoms I realised I had bad fatigue for a few months prior. And slight tingling but I robbed it off. The numbness and tingling lasted a week. It didn’t let up it was so intense and frustrating.

    I now have intermittent fatigue where I feel like my body is heavy. Memory and thinking issues. I forget what I was going to say or why I went to a certain place. I also think my temperature gauge is broken. I don’t feel heat or sweat like other people. It’s weird, everyone is hot, sweaty and complaining of being hot. I just don’t feel it. Not sure if that’s even a symptom, or if it’s relevent.

    My brain MRI showed the optic neuritis, 1 lesion, 5 other white matter T2 hypersensities ( whatever that is) my spine MRI was clear. This all happened from October to January. One of the neurologist in my team said she thought I should be put on treatment, then the head neurologist opted to waitand see.

    So here I am I’ve had follow up scans and I’m waiting to be seen tomorrow to find out if there has been any changes in my scans. If I will be put in treatment or diagnosed. Or if I’ll be in the watch and wait category. All I can say is it’s a very stressful place to be..... I don’t really have any questions I just needed to vent somewhere that maybe I could get some useful insight. 😊

    ** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

    #2
    Hi Jaynus and welcome! Thanks for sharing your story with us, although I'm sorry for your reason of being here. My MS story started out with optic neuritis so many years ago, but was undiagnosed for a very long time.

    I know it's always a shock to hear the words MS. And scary. All of us here understand and we'll always be here to support you - even while venting! So, you have come to the right place at the right time.

    As far as being on a treatment vs. taking a wait and see attitude, it seems like neurologist are nowadays more likely to get you on a treatment plan as soon as possible. I hope this will be the scenario for you.

    And now they have more treatment plans that have a better efficacy rate than ever before!

    Please let us know how your appt goes tomorrow. Please remember the Dr is there to listen to you and your desire and needs....not the other way around. If they don't, then shop around for someone else. many of us have had to do so.

    Take care of yourself and let us know how we can be of help to you!
    1st sx '89 Dx '99 w/RRMS - SP since 2010
    Administrator Message Boards/Moderator

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      #3
      Welcome. Jaynus.

      Yes; limbo is a stressful and uncomfortable place to be. When I'm asked how it felt to be diagnosed with MS, my answer (which others don't expect) is "relieved". After almost two years in limbo, it was a relief that I finally had a diagnosis and could begin to treat my illness.

      I hope your IV steroids will be effective in relieving symptoms, and that a diagnosis will come soon.
      ~ 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


        #4
        Thanks for the responses. I will be starting Copaxone in the next week or so... being in limbo made me feel like a sitting duck, waiting for the next flare and over thinking everything I Feel. I now feel somewhat relieved that I'm doing all I can to prevent anymore symptoms, rather than just waiting for something that may or may not happen.

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