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Frustrated and paranoid.

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    #1

    Frustrated and paranoid.

    Hi. I haven't posted here yet. I joined in 2013-ish when my pediatrician first suspected MS. After much testing, they ruled it out (or so I had thought), and I was left with no diagnosis for a mysterious neurological problem. Yay.

    Anyway, my newest PCP was going through my old cardiology referrals and tests looking for things, and came across this unresolved problem. She referred me back to neuro.

    I finally got around to asking her about it today, and apparently my old neuro (who was a jerk and tried to dismiss me as psychosomatic) left concerned notes in my chart about MS still being a possibility. Thus why my doctor has decided to re-open this nightmare.

    I was perfectly happy letting it go unresolved. I have a list of diagnosis a mile long (including two valve defects, an autonomic dysfunction, a connective tissue disorder, fibromyalgia, and others. Yay.) Truth be told, I had wondered if maybe my neuro symptoms could be a condition that often comes about with the CTD, but without insurance or access to an upright MRI, didn't question it further. Regardless, I don't care about getting more diagnosis; they hold no meaning for me anymore. Just another name to add to the pile of things that go untreated, unresolved, and that annoy me with their continued existence.

    Now I don't know what to think or do. I'm already swamped with medical issues (the heart valve defects and autonomic dysfunction have shown up in the last 6 months, and I also am preparing for surgery to have my gallbladder removed as it is full of stones and causing symptoms). I have school to contend with, and finals coming up. I don't have the time nor the energy to put up with this again.

    Sometimes I count myself lucky I have a super smart PCP who actually seems to care. Other times I just wish they'd leave me to suffer in peace.

    I don't want advice or sympathy; I just felt the need to rant to people who will probably actually get it

    Thanks.
    Last edited by Seasha; 04-16-2015, 12:35 PM. Reason: edited per guideline #4
    Dx Possible MS - 4/11/13
    Tags: None
    #2
    I can understand why you are frustrated and feel like giving up on the whole situation. However, if this is MS, you want to start treatment ASAP to prevent as much disability as possible. So it is good to pursue it. Why do you need an upright MRI? Is that for the CTD? Because for MS the protocol is best for a closed MRI, the images show up better (lesions are more likely to be seen). Many people are in limbo for 10 years or more so I am sure you are in good but frustrated company here. My advice, even though its just a rant, go for the consult and workup. It is worth it. Go to a large teaching hospital with an MS specialist. Apply for Charity Care so you will not have to pay all of the bills depending on your income.

    Let us know how things go, OK?
    Take care
    Lisa
    Disabled RN with MS for 14 years
    SPMS EDSS 7.5 Wheelchair (but a racing one)
    Tysabri

    Comment

      #3
      Originally posted by 22cyclist View Post
      I can understand why you are frustrated and feel like giving up on the whole situation. However, if this is MS, you want to start treatment ASAP to prevent as much disability as possible. So it is good to pursue it. ... My advice, even though its just a rant, go for the consult and workup. It is worth it. Go to a large teaching hospital with an MS specialist. ...
      I agree. Disase-modifying meds (DMD's) can do a number of things, including delaying progression of the disease. If you have MS, you probably will want to know, so that your quality of life, in the future, can be higher.
      ~ 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
        22cyclist: I need an upright to look for a possible Chiari malformation or CCI. Both are much more common and likely to occur simultaneously with my CTD.

        As far as diagnosis go, I'm already disabled, I doubt I'll live past 65, I'll never have children, and I really have no desire to be put through more stress for something I don't seem important right now. It won't make any difference to me. I've done my research; however, the likelihood of actually having ms and being diagnosed with it is slim to none in my case. I am mostly frustrated that my doctors are choosing to drag up ancient history years later. If they were still concerned years ago, then they should have told me and continued to pursue a diagnosis back then.
        Dx Possible MS - 4/11/13

        Comment

          #5
          Agree with 22cyclist and Mamabug, the only thing I would add is the possibility that if you are experiencing active MS disease, it could be complicating your other medical conditions. Getting a MS dx may lead to better sx management via disease modifying drugs for MS to hopefully slow disease progression.

          I can't imagine how frustrated you must be with the number of health problems you deal with.

          Good wishes and best of luck headed your way.

          Comment

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