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A Poll About Testing


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Poll: Tests used to diagnose you... (16 member(s) have cast votes)

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

  1. no (0 votes [0.00%])

    Percentage of vote: 0.00%

  2. yes, one and they showed positive results for narcolepsy (10 votes [58.82%] - View)

    Percentage of vote: 58.82%

  3. yes more than one with vared results or all positive results (3 votes [17.65%] - View)

    Percentage of vote: 17.65%

  4. Yes one, but it was negative for narcolepsy criteria (4 votes [23.53%] - View)

    Percentage of vote: 23.53%

Did you have one or more actograph tests used in your diagnoses?

  1. What is an Atograph? (6 votes [37.50%] - View)

    Percentage of vote: 37.50%

  2. no (9 votes [56.25%] - View)

    Percentage of vote: 56.25%

  3. Yes, one with/without sleep diary (0 votes [0.00%])

    Percentage of vote: 0.00%

  4. Yes more than one (1 votes [6.25%] - View)

    Percentage of vote: 6.25%

Did you have blood tests/ CSF test to determine your diagnoses?

  1. no (12 votes [66.67%] - View)

    Percentage of vote: 66.67%

  2. Yes blood test for the genetic marker, and it was positive (3 votes [16.67%] - View)

    Percentage of vote: 16.67%

  3. Yes CSF test for Hypocretins and it was positive indicating narcolepsy (1 votes [5.56%] - View)

    Percentage of vote: 5.56%

  4. Yes blood test for genetic marker and it was negative (1 votes [5.56%] - View)

    Percentage of vote: 5.56%

  5. Yes CSF test for Hypocretins and it was negative indicating no narcolepsy (1 votes [5.56%] - View)

    Percentage of vote: 5.56%

  6. Yes both (0 votes [0.00%])

    Percentage of vote: 0.00%

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#1 Krickett

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Posted 18 June 2013 - 08:24 PM

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



#2 Kimberly

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Posted 18 June 2013 - 08:43 PM

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.



#3 Krickett

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Posted 18 June 2013 - 09:01 PM

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



#4 Krickett

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Posted 28 June 2013 - 10:41 PM

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



#5 The Dreamer

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Posted 01 July 2013 - 07:13 PM

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.



#6 Krickett

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Posted 07 September 2013 - 06:19 PM

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