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Living La Vita Limbo

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    #31
    My motto for 2020 is "Relentless Optimism". I know, my previous post was not necessarily in line with that motto, but I am still trying to keep it at the forefront through out this adventure. Keeping with my efforts at "Relentless Optimism", I followed up on my neurologist's referral to see a rheumatologist and was able to secure an appointment for last Monday.

    Even with the nagging thoughts that nothing in my symptoms indicates a rheumatological disorder, I decided that I would press forward with relentless something and present everything I could think of to the new member of the "what is wrong with McJedi" team.

    In fact, I made up a document that had a timeline of things I have experienced throughout the past 21 months including office visits, possible symptoms (like falls and nausea), imaging, labs, and nerve testing. I wanted to paint a full picture from the patient's perspective. After all, a single note in a chart stating "reports frequent falls" does not accurately represent my having four falls within a one week period.

    Monday came and I showed up bright and early for my appointment with the new patient forms in hand as well as my medical autobiography. The medical assistant took our forms, showed us to our room, did the typical blood pressure and temperature checks and left us to wait. Finally, the doctor came in.

    His first comment was that he reviewed my chart and the documents I provided... and he couldn't understand why the neurologist had sent me to see him. He then went on to discuss the possible disorders based on my symptoms and that between the labs and the imaging, it is clear that I do not have any of the disorders. He then completed an exam to ensure that it was not an atypical presentation of fibromyalgia and spent some time discussing more of what I don't have.

    I should mention here that I am always very careful in presenting my symptoms and concerns to a new doctor to not bias the evaluation towards a specific condition, such as MS. I don't mention MS or anything else... just let them tell me what they think.

    As the rheumatologist discussed what he evaluated me for and what he found, the conversation went to MS. He then spent a great deal of time discussing how the imaging does not always preclude a diagnosis and that lesions and symptoms do not necessarily occur at the same time (something I was already aware of). The encounter ended with a discussion of possible changes to my medications to address pain and other symptoms, which he stated he would pass on to my neurologist in his notes.

    At the end of the visit, I left no closer to an answer then when I arrived. But I did learn that the use of my document was obviously a valuable addition as he referenced it a number of times throughout the visit. With a new found tool, and a motto of relentless pestering... err, I mean relentless optimism, I am now better prepared to present a case to my next neurologist.

    On the note of my next neurologist, I am now scheduled to see someone at the University of Washington neuroscience department in May. A long wait... but hopefully worth it.

    As for my current neurologist... well, when I last saw him he didn't have a followup appointment schedule, so I am going to wait and see if he reaches out to me or if he truly has dumped me.

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      #32
      Originally posted by McJedi View Post
      In fact, I made up a document that had a timeline of things I have experienced throughout the past 21 months including office visits, possible symptoms (like falls and nausea), imaging, labs, and nerve testing. I wanted to paint a full picture from the patient's perspective. After all, a single note in a chart stating "reports frequent falls" does not accurately represent my having four falls within a one week period.
      Very wise to make the document, McJedi!

      Originally posted by McJedi View Post
      At the end of the visit, I left no closer to an answer then when I arrived. But I did learn that the use of my document was obviously a valuable addition as he referenced it a number of times throughout the visit. With a new found tool, and a motto of relentless pestering... err, I mean relentless optimism, I am now better prepared to present a case to my next neurologist.
      Good for you, McJedi! If nothing else, being optimistic and determined sure feels a lot better than being pessimistic or dejected.

      Originally posted by McJedi View Post
      On the note of my next neurologist, I am now scheduled to see someone at the University of Washington neuroscience department in May. A long wait... but hopefully worth it.
      Glad for you that you were able to get an appointment! Keep that valuable document in a safe place, and update it as necessary.

      Take Care
      PPMS for 22 years (dx 1998)
      ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

      Comment


        #33
        It sounds like you were prepared for your visit.

        I hope that, between your two specialists (neurologist and rheumatologist), someone will be able to provide an accurate dx 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.

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