Krickett

A Poll About Testing

Tests used to diagnose you...   16 members have voted

  1. 1. Did you have one or more overnight sleep tests along with the MSLT (nap test)

    • no
      0
    • yes, one and they showed positive results for narcolepsy
    • yes more than one with vared results or all positive results
    • Yes one, but it was negative for narcolepsy criteria
  2. 2. Did you have one or more actograph tests used in your diagnoses?

    • What is an Atograph?
    • no
    • Yes, one with/without sleep diary
      0
    • Yes more than one
  3. 3. Did you have blood tests/ CSF test to determine your diagnoses?

    • no
    • Yes blood test for the genetic marker, and it was positive
    • Yes CSF test for Hypocretins and it was positive indicating narcolepsy
    • Yes blood test for genetic marker and it was negative
    • Yes CSF test for Hypocretins and it was negative indicating no narcolepsy
    • Yes both
      0

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6 posts in this topic

I posted this poll as well because of the random series of testing my current sleep doctor is wanting on me, just curious what others experiences have been

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With regard to question #3, my doctor did not do any blood or CSF testing. I submitted a blood sample for research at a Narcolepsy Network conference, and received a letter back from Stanford University notifying me of the presence of the genetic marker.

 

So -- did I have that testing for my diagnosis? No. Did I have the testing? Yes. Just wanted to clarify.

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You probably had the BEST possible people to read your results.. i wasnt shown mine... 

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I just recently went to the wake up nashville event and gave blood to the stanford people as well :D

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I didn't really fit the poll....in that i had one MSLT....first doc said it was negative....second doc said there were traces of REM in naps 3 & 4 suggesting Narcolepsy, but I don't have Narcolepsy....finally third doc said it correlates with his other findings for a diagnosis of Narcolepsy.

 

The PSG/MSLT had said in a couple places "suggestive of Narcolepsy, clinical correlation recommended/suggested"....but the conclusion was negative.  second doc was only interested in objective tests.

 

I had gotten the blood test before my MSLT (at an NN conference), but the result didn't come until after....and there are plenty of disclaimers that being positive for DQB1*0602 doesn't mean you have Narcolepsy....(and some that being negative doesn't rule it out....)

 

I had a positive blood test result.

 

The Dreamer.

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Agreed... there are ACTUALLY MANY MANY different markers commonly found in PWN.. not JUST the 602.. not quite sure why the 602 is so focused on.. but all in all... the genetic marker tests...mean nothing..lol

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