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new here- wondering how assertive to be with my doctor

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    new here- wondering how assertive to be with my doctor

    Hi everyone, I am new here and want to ask for a bit of advice.

    For 2 1/2 years I have had fatigue, pain, muscle spasms, difficulty climbing stairs, mental fog, everything much worse in the afternoon/ evening. I have been unable to work and I believe I am currently plateaued at my new normal, and have gotten pretty good at navigating the debility. Sometimes my muscles (even my heart it feels like) spasms and flutters so violently you can see it from the outside.

    I had an episode roughly 12 years ago that lasted about a month that was similar but not this intense, and it resolved on its own.

    Incase it is of interest- the recent symptoms flared after a simple spinal surgery that resulted in a neurogenic bladder, which then required catheter, which then involved a cascade of 15 infections -one right after another. Some bladder, some skin, some MRSA, some resistant Ecoli. Also frequent dizziness/ syncope episodes that have resolved.

    Here is my question- the neurologist did lots of labs, spinal MRI, EMG, and tilt table autonomic functioning tests. He said I was "fine" and refused to do anymore testing. I went to a teaching hospital in town (Portland) for a second opinion, and they repeated the EMG and a couple more labs- all negative. They said there was no more diagnostics to do. Since I was still receiving long term disability from my job (nurse), the disability company required I get a function study done by a PT- they noted a lot of deficit, but to be fair- that appointment coincided with a flare.
    No one tested me for Lyme, in fact my infectious diseases doctor told me it didn't exist. No one has ever imaged my brain, nor evaluated my Spinal Fluid.

    My understanding is that some of the conduction tests and labs should have been done after fatiguing me somehow, but they didn't. Anyone one know if this concern is valid?

    Should I keep up trying to find a neurologist? I tried to schedule with MAYO clinic, and they said they couldn't give me an appointment. Does anyone understand why no one will work me up further? Does this normally take this long to get a diagnosis? I have no current or historical mental health concerns, not an addict, just so confused!

    Very grateful for any opinions and/ or wisdom!


    If I understand correctly, you are having difficulties without diagnosis? Find a doctor or an NP that will work with you. Do the research yourself if necessary, demand tests that you think will lead down the path. You are your most informed advocate.
    The future depends on what you do today.- Gandhi


      kristinemalia, very sorry to hear about your medical problems, pain, suffering and understandable concerns. I'm not sure if your SXs are related to your spinal surgery, but that can create bias in favor of associating your SXs with your surgery, possibly attributing SXs to post surgery "distress".

      I agree with Boudreaux, but would add that you include your PT results prominently when requesting a referral or consult with a new MS Specialists. Based on personal experience, many similar tests I had performed post MS dx, were normal but were also performed after specific sx resolved. My personal opinion is that some test are more sensitive to detecting abnormalities when a patient is symptomatic, versus testing performed after SXs have resolved. Unfortunately, medical testing schedules don't always coincide with sx presentation.

      Why a Neurologist would order MRIs of your spine but not include MRIs of your brain is concerning.

      Take good care and best of luck.

      BTW, which Portland? I have a referral to an MS specialist if you're interested.


        Hi Kris.

        You have had an awful lot going on and I am truly sorry.

        Does this normally take this long to get a diagnosis?
        A diagnosis of MS? Or a diagnosis of something? Reading your post I am trying to understand why you believe you have Multiple Sclerosis.

        I tried to schedule with MAYO clinic, and they said they couldn't give me an appointment.
        My understanding is the Mayo Clinic schedules appointments based on Dr. referrals. I could be wrong but this was how it was done for the few people I personally know that went to the Mayo Clinic.

        Should I keep up trying to find a neurologist?
        The problem, based on what you have posted is an assumption on your part that what you are dealing with is Neurological. It's always possible that it's not a Neurological disease. You might try starting at the beginning with a Primary Care Physician to evaluate, test, and/or refer you to other Drs. if necessary.

        I wish you all the best and hope you find answers.
        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



          I am so sorry that you have to be the one pushing hard for a diagnosis. You obviously have not encountered sufficient medical expertise to achieve a diagnosis and you have thoughtfully come here for suggestions. Your instincts are spot on; you know something is going on and identifying it is the first step to addressing it. Congratulations! Be persistent and an answer will come.

          Maybe you have MS, maybe you don't. At this point not enough tests have been done to identify the problem.

          MSW1963 made an excellent suggestion... find a neurologist who is an MS Specialist and request more comprehensive testing... certainly a brain MRI and CSF analysis.

          Here is a link to familiarize you with the tools a competent neurologist specializing in MS would use to help make a diagnosis. It will enable you to ask good questions and discuss diagnosis protocol in more detail. BTW, if your current doctor is not up to the task, as it appears, search for a doctor willing to persist with you! Your health and career are far too important to tolerate insufficient medical attention by current providers. JMHO. Here is a link to get you started...

          Stornoway MS Research Day: The neurologists' toolkit by Sharmilee Gnanapavan

          Best Wishes!