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Having a hard time in la la limbo land

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    Having a hard time in la la limbo land

    Hey all,

    I have been experiencing MS Symptoms for a few years now, and as a nurse I realized them as I had them; however, I felt that it was something that needed time to develop. (And I did not want to be correct).

    I have had a history of weakness, imbalance, and falling as a result (most of the time) of not lifting my leg high enough. This causes me to trip, stumble, and fall. Those damn curbs and uneven ground are the worst. So many moments embarassing myself.

    The symptoms started to get worse, after the birth of my baby a little more than a year ago. Since the birth, I have had moments of bladder/bowel incontinence, brain fog like you would not believe, memory impairment, headaches, numbness in my arms/ peri area. The worst was recently for about 6-8 weeks I could not use my arms much as they were numb. It started on one side and went down my finger tips. It was a constant pain with intermittent muscle spasms which were so painful. This feeling then spread accross my shoulders to the other arm. I was unable to do much during this time, including hold my baby. Something similar happened last year and I was able to request a neuro consult-- but it was not as severe then. I went today to see the neuro.

    I am also having hearing issues, but my hearing test states it is totally fine. However, if I am in a room with loud noises, I cannot hear well at all. It is to the point that I rather stay inside with no music just so I can hear. It does not make socializing much fun. Has anyone experienced this?

    I finally got in with a neurologist today. And he found that I had a positive Babinski reflex. I have to have an MRI over the next while and he said he suspects MS.

    I am just wondering if anyone has experienced anything similar. Or has any advice?

    I am feeling scared, and sad, about what my future holds. I have worked with MS patients and I have seem some scary things. I am trying not to "go there", but its hard. I am very depressed and anxious. Its so hard to do anything-- so I thought I would reach out.


    Sometimes knowledge doesn't feel like a good thing.
    If you were nursing then you would have seen ms patients at there worst times. Much like those of us that have experience with family members who had ms.
    It can be very scary.

    Please remember as you go through the process of diagnosis of your symptoms-the vast majority of us have large portions of our lives where we are fit and healthy and you may not have had the opportunity to see this.
    I have been experiencing ms symptoms for over 33 years (52yold) and although there have been hard times and i do have some burrs under my saddle i am still mobile and active and have lead a very full life.
    i pride myself in the fact that many able bodied people don't seem to have accomplished what i managed to.
    With my worst relapse i was almost completely paralysed for a couple of weeks and yet last week i climbed up onto my roof to fix something.

    There are good and bad patches.
    Please have heart,


      Hi whatsnextforme.

      Did your Neurologist order both brain and spine MRIs? Wishing all the best with the diagnostic process.
      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


        Although my symptoms were different, yeah -- I definitely experienced limbo.

        As a nurse, are you familiar with the McDonald criteria for diagnosing MS?
        ~ 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.


          So sorry you are having trouble. As a nurse, I am sure you know that MS is a diagnosis of exclusion. So MS mimics need to be ruled out. I am glad you have a proactive neuro.

          I do have the trip thing, especially when tired. I just stop picking my foot up. I also understand the crowded room hearing issue. My husband tells me I have dog hearing, as if just me, the TV volume is at 4. But put me in a crowd, I am constantly asking "what did you say?".

          The best advice I can give, whether MS or not, make time to exercise and learn stress reduction strategies.

          MS can be very variable. There are also DMTs available that can reduce relapses and slow progression. Some of the patients you cared for may not have had that option. You will find people with MS that lead a totally normal life, with only reminder that they need to take a pill, inject, or be infused.

          Hang in there. I know the wait can be angst ridden. Try not to focus too much on it, and if you do research on the internet, stick to basic sites. If you Google, you can drive yourself over the edge.
          DX 01/06, currently on Tysabri