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    Questions to ask for appt with neuro tomorrow

    Hi guys. Tomorrow is the day that hopefully I get a diagnosis so that I can start treatment. But I'm hopeful that in the event she diagnoses NOT MS or still in limbo that you guys can help me think of questions to ask to help me get a handle on all this.

    The basics are:
    MRI: 4 mm hyperintensity in white periventricular matter of right frontal lobe and a 7 mm one in white periventricular matter of right parietal lobe. Typical radiological boilerplate about demyelinating process, ischemic change or vasculitis with clinical correlation recommended. Neuro says these don't scream MS to her.

    Blood work abnormalities: Sed rate: 39, Vitamin D 21, serum creatinine 0.43

    CSF abnormalities: (no o-bands which is gonna make getting the dx tough, I think) CSF albumin low at 9, CSF glucose high at 76, CSF IGG index just at the edge at 0.6.

    VEP abnormal bilaterally indicating demyelinating process involving both optic pathways.

    In addition to my presenting symptoms which were enough for two different doctors to mention MS, the latest is what seems to be a case of eye ickiness a couple of weeks ago (I'm reluctant to call it optic neuritis because the dx at urgent care was "eye pain") which was made better painwise with the horrible methylprednisolone although the vaseline-esque quality of my vision in that eye is not better.

    SO -- I'm not asking for any of you guys to guess whether I'm going to get the diagnosis or not but I am asking for your help in knowing intelligent questions to ask either way. I'm better off to be prepared because I'm going to be at the visit by myself and I know I won't think of everything.

    THANK YOU.

    Shelby

    PS Sorry so long.

    #2
    Depending on how your MD views your VEP results and 2 lesions which from what you are saying he/she says are nonspecific, you may or may not meet criteria.

    You might meet criteria for CIS though, with your VEP results and an episode of ON plus brain lesion. It all depends on your MS specialist.

    A lot will ride on your physical exam and history. You will need to be sure to go over each exacerbation with them, length of time it was, and how long it was between then and the next one.

    This will provide for dissemination in time.

    Good luck tomorrow.

    Should you get diagnosed, ask about risks and benefits of the DMDs, their experience with them, and take your time in making a decision.
    Disabled RN with MS for 14 years
    SPMS EDSS 7.5 Wheelchair (but a racing one)
    Tysabri

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      #3
      Have they suggested anything else to you?

      I guess my first question would be, what else is still on the table for causing these symptoms? What else causes these types of lesions? In what way, are these lesions not typical of MS?

      If they suggest CIS and not full blown MS, I would have a long conversation about starting drugs vs waiting. In my experience, beginning DMD's at this point is still a very divisive issue. Some of the DMD's are approved for CIS, so this is worth exploring.

      Just ask the doctor to explain his thoughts very clearly. If not MS, what would change his mine? What are the other options on the table?

      Decide whether you're a person to want to sit and wait until the next issue (if ever!) or continue any further testing the doctor can suggest. I think a lot is based on personality and what you are comfortable with.
      Symptoms Oct 2009, Dx Feb 2010. betaseron 2/10-2/12. Copaxone 3/12- present.

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        #4
        No O-Bands = No MS according to neuro

        but I asked enough questions that she has referred me to the University of South Florida Neurology department. It can take 3-6 months to get an appointment.

        She also said that with a Vitamin D of 21, the 2000 IU daily I am doing should be sufficient and she would defer to my PCP on that whom she is sure is more knowledgeable than she.

        In the meantime, I'm changing the diet, exercising as I can, doing whatever I can do to get mind and body healthy. When the appointment rolls around, if I want to jump back on the merry-go-round ( and can afford to ) I will but in the meantime I'll be a hopefully stronger and healthier me.

        Comment


          #5
          I have had MS sx since my teens, that many decades ago.

          Most of my lesions are classical Dawson's Fingers, clinical Hx typical of MS, EVP typical (but not exclusive) of MS, diplopia since 1964 typical of MS. Even my LP supported the MS dx.

          HOWEVER... lack of O-bands does NOT exclude MS, at least that is my understanding.

          Good luck with your USF follow-up. I hope you get some real answers.

          Gomer Sir Falls-a-lot (it's Gomer's season, fall)

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