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How do you talk about it in limbo?

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    How do you talk about it in limbo?

    Hi all, I'm new here. I live on Maui, I have a fabulous neurologist who specializes in MS; he's had an impressive medical career on the mainland and recently moved out here. That said, I do live on an island which offers a more rural level of testing and care avaiable. I am a 40 yo home health nurse married to my favorite fire fighter, we have a teen and a tween.

    Last month I finished up the testing available to me-I've had MRIs of my head and spine, and a lumbar puncture. My LP was negative, and I had a few 2-3 CM lesions in my brain, none in my spinal column. Going off that information, I was hopeful my neuro would say it was a wait and see situation. However, because of my symptoms and the placement of my lesions, he's about 80% sure I have MS and said I could start Copaxone.
    My main symptoms include nystagmus, brain fog, fatigue, and urinary retention. I do have R calf pain but I'm trying to blame that on my 30lb weight gain in the last year, lol. I am very heat intolerant, and along with a huge exacerbation of my symptoms while in the heat, I get a headache and become dizzy.

    So here's my question (finally! LOL): How do you talk to others about your diagnosis if you don't actually have a positive diagnosis? "The doctors think I have MS" or " I most likely have MS"? Or do you just say you have MS? The few people I have told "I probably have MS" want to know what that means, it's not only a pain to explain but some people seem to think if I don't have the diagnosis I don't have the symptoms either.

    To be clear, I don't mean how you discuss this with family and close friends-we have been very explanitory with them as they really want to know and are invested in my well-being. How do you tell other people you interact with regularly and notice that somethings going on with you?

    #2
    Sorry to hear you are experiencing symptoms. I was a quick diagnosis, so can't help too much. Could you try something like: the doctors suspect MS, but the process to diagnose or rule it out is complex and takes time.

    The other option could be to thank them for their concern, that you are working with your doctor to see what is wrong, but no answers yet. This would work for people that you may not want to know you have MS, possibly your employer or just nosy people you don't want in on your business

    I hope one day to travel to your beautiful island!
    Kathy
    DX 01/06, currently on Tysabri

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      #3
      A few weeks ago I was telling my wife my dream of moving to Hawaii (Big Island or Maui) is probably over now because I figured the chances of a decent neurologist on the islands was close to zero. I'm glad you were able to find such an awesome neuro and you've given me some hope as well

      I'm curious why your lumbar puncture would be negative if the neurologist is comfortable diagnosing it as MS based on lesions; sounds like there is a degree of confidence this is MS based on lesion size, shape, and location? Reports of negative LP always make me feel uneasy due to my own status in limbo

      To answer your question, I tell people "I'm dealing with some health issues at the moment". If they ask what kind I say "neurological". If you're comfortable with it, you can say you're "being treated for MS".

      "I have a neurological disorder" is another good one for those that are truly in limbo because it's technically true - be it lyme, spinal issues, or heart problems... if it's affecting the nervous system, it's a neurological disorder.

      I wish giving it a label didn't matter so much to people. You're dealing with the symptoms, what difference does it make if it's MS or not? Some people have MS and live normal lives with minimal disruption and others severely disabled by it, so being labeled as a person with MS doesn't really say as much in my opinion. It's how the symptoms are affecting the person that matters.

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        #4
        Thanks for the feedback, guys.

        Originally posted by stevemills View Post
        A few weeks ago I was telling my wife my dream of moving to Hawaii (Big Island or Maui) is probably over now because I figured the chances of a decent neurologist on the islands was close to zero. I'm glad you were able to find such an awesome neuro and you've given me some hope as well
        You can always fly to Oahu, too, for a better selection, too!


        Originally posted by stevemills View Post
        I'm curious why your lumbar puncture would be negative if the neurologist is comfortable diagnosing it as MS based on lesions; sounds like there is a degree of confidence this is MS based on lesion size, shape, and location? Reports of negative LP always make me feel uneasy due to my own status in limbo
        That's how I felt as well-uneasy about a negative LP-but as I started doing more research, I feel more comfortable having a negative LP and still holding on to the possibility of MS. A positive LP is not a requirement of the disease (I'm sure you know), and Mayo laboratories says the number of patients with a confirmed diagnosis of MS and negative LPs is about 20-30% of patients, which is pretty significant.
        On my MRI, I did not have any actively forming lesions, only older ones, but due to their size, shape, and location (exactly as you said) they were suspicious for MS. In fact, when I dug around radiology and neurology medical journals looking for lesions that may mimic the type I had, I couldn't find anything worth even bringing up to my Neurologist.

        For now, I'm telling people I have "probable Ms", unless it's a "tired" day, in which case I may tell them to mind their own beeswax. (Just kidding. Kind of.)
        SaveSaveSaveSave

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          #5
          Originally posted by pennstater View Post
          I hope one day to travel to your beautiful island!
          Come on over! If you're heat sensitive, just do a bit of research first-the humidity makes parts of the island a no-go for me.

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