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    Narcolepsy?

    So... after my pcp was convinced i had MS, and the subsequent referral,i was basically blown off by my neurologist. at my initial exam he kept interupting my history and asking about something i said 5 minutes ago, until he lost all interest the moment i said the word "vague".
    I had an MRI w and w/o contrast (but in an open facillity? I hear thats no good but the neurologist and the radiologist both assurred me it made NO difference)

    And an eye exam where the opthalmologist said he thinks my eye muscles are just getting "old"and tired (he wrote me a prescription for glasses with prismwhich did seem to help with my vertigo feeling some, I am so glad i got the big ugly glasses the ones usually like are small and would have probably made me throw up by now).

    The only bloodwork i've had is CBC and tsh, ordered by the gynocologist who was hoping i was anemic so he could scam me into some surgery he wants to do. And they came back normal.

    Anyway after all that I go back to the neurologist for the follow up and he walks in the room and says"so this is your first visit with us?" I told him i had been there three weeks ago and he said "oh but not an office visit with me?" and then looked me up and said he remembered me but i dont believe him. he said my mri didn't show any change and since i didnt have an abnormal neurological exam last time, and the mris didnt show anything we would wait and "observe me" i told him my biggest concern right now is fatigue right now, all my other symptoms have cleareed up, and he says"Maybe you have narcolepsy" and referred me to a sleep specialist.

    This is getting so frustrating. I really just want to have an answer so I know whether this will pass get worse or be treatable-can i manage going back to school?, can i afford to marry my fiance(theres no way i could afford the copays while all this stuff is going on and my medicaid will stop if we marry)
    I feel like if the neuro was REALLY listening to me like my doctor did, that we would be on our way to figuring stuff out, and while i'm hopeful that the sleep specialist will be able to treat me for my fatigue, I'm terrified that something is really WRONG and just going to get worse.

    So my question is other than the sleep specialist, what do i do next? back to square one, with the regular doctor see if he'll order bloodtests? or refer me to a different neuro? or wait and see if and when other symptoms act up agin?

    #2
    Oh my dear, I am sorry for all you are going through. But this neuro sure acting like an IDIOT! He sure wasn't being very attentive and LISTENING!!

    Is this neuro a MS specialist? I mean that he ONLY see MS patients? I don't understand that he takes your fatigue as a sign of narcolepsy when fatigue can mean so many other things.

    I would scurry to another NEURO to rule OUT Narcolepsy. Even if this one wants you to get a sleep study, is he trained in evaluating for Narcolepsy?

    I would suggest you keep a list of all your signs, symptoms, duration and intensity. Just for your own records and to bring along when you see your NEURO.

    Just because your PCP suspects MS, that doctor is not trained to make the diagnosis. But he/she may know enough, and know YOU well enough to have an educated hunch. My PCP was so accurate though not qualified to make the diagnoses I ended up getting, her hunch was accurate.

    I know your life seems to be on hold. I remember that well. As lousy as you must feel at times, take care of YOU and take each day one at a time. Try really hard not to project into the future because you're only wasting precious energy you need to live out TODAY!

    One day you WILL have the answers you deserve. Trust that process. I just would not stay with this neuro if you can find another for another opinion.

    Hang in there hon! And let us know how you are doing. We'll be here for you, know that ok?

    Warmly, Jan
    I believe in miracles~!
    2004 Benign MS 2008 NOT MS
    Finally DX: RR MS 02.24.10

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      #3
      Similar story

      Krissykk,
      Know that your story now sounds very similar to mine and now my neuro thinks my 5 falls are due to cataplexy or at least that's what he told my pcp when she called him when she couldn't find a physical issue with the knee and started asking more about my symptoms.

      I have another appointment on June 13", I plan on writing every symptom between now and then down. I am so sorry your going through this because its so frustrating. Hopefully we both get answers soon.

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        #4
        I would definitely see another neuro... Doctors should remember you. The guy I was seeing takes about 100 patients a day and that's why I found out he was set on my MS dx very suddenly. I have an appointment with a different neuro next week. The run around can be so frustrating. I will say a prayer that you get to a much better doctor who can give you the care you need so that you can move on with your life, get the right treatment and marry your fiancée!

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