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Seeing a neurologist - any tips?

Discussion in 'Neurological/Cognitive: Brain Fog, Concentration' started by andypants, Dec 1, 2017.

  1. TigerLilea

    TigerLilea Senior Member (Voting Rights)

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    Metro Vancouver, BC
    I had a GP years ago who was sending me to a specialist and she advised me not to mention ME/CFS if I wanted to be taken seriously. She never knew about the neurologist incidence as it was my dentist who had sent me for that appointment.
    Squeezy and TiredSam like this.
  2. andypants

    andypants Established Member (Voting Rights)

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    @Forbin it’s been about 20 months since my onset. Thank you for the tip about ruling out other conditions, I think that will have to be my goal going in.

    Probably true. I wonder if presenting it as if I’m challenging my diagnosis might be more productive? Given that she will already know I have it.

    This is super helpful! Writing a list and checking it twice:) Thanks!

    She will already know, she has my file. However, I don’t have to say I agree with my earlier diagnosis, or can at least downplay it.

    @Arnie Pye I’m sorry your doctor doesn’t have a clue. Thank you and good luck to you too!
  3. Squeezy

    Squeezy Senior Member (Voting Rights)

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    I think that presenting like you're challenging your diagnosis might be a good approach to take. Since there's no definitive test for ME, how can you be sure you don't have one of the other neurological diseases unless you are tested?

    Surely a top doctor such as she can see that your symptoms are such that it's the responsible thing to do? ;)
    Forbin and andypants like this.
  4. Nellie

    Nellie Established Member (Voting Rights)

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    Not just for a neurologist, but I would advise anyone seeing a specialist to request a copy of any letters written to your GP. Few have been surprised at my request and they have all complied.
  5. Alvin

    Alvin Senior Member (Voting Rights)

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    I don't agree, if the neurologist believes the CBT/GET crap then your giving them an excuse to dismiss you. In my experience dealing with many, many specialists its best to mention your symptoms, what tests you have had done and ask them to try to get to the bottom of it. The reason this is better then starting with ME/CFS is if the doc sees it in your chart they might ignore it and do tests on you but if you bring it to the forefront they may latch on to it then the opportunity is wasted because your diagnosis is "solved". That said they may notice and latch themselves, but the idea is you don't make it seem big unless they probe it, because if its a "minor" constituent to them then they may not hold it against you as much because they may just think some doc added it on not that its your major issue.
    I'm not sure if that makes any sense, i'm kinda mentally drifting today.

    In an ideal world doctors would have this much sense, in our world only a few percent do. If its ME/CFS already diagnosed then they just need to parrot it, and if they believe in CBT/GET then they will advise to do this and diagnostics are over. If its on the chart but not emphasized but the symptoms the patient has are serious they are more likely to start digging because perhaps its just a adjunct diagnosis. Thats basically what the OP should be going for because even if the doc knows what ME/CFS is at a high level its practically human nature to latch onto the obvious and ignore warning signs.

    I agree, i actually ask for all test results and reports (family doc has been good and neurolgist's hospital has them online) so when i go to a new doc it saves time in them requesting them and needing another appointment to go over them, saving time, and the energy of another visit and hopefully speeding diagnosis.
    Nellie and andypants like this.

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