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Number Of Sleep Studies & Length Of Time To Get Your Narcolepsy Diagnosis?

Sleep study MSLT PSG PWN Diagnosis Poll

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Poll: Poll: Number of sleep studies & over what length of time to get your narcolepsy diagnosis? (20 member(s) have cast votes)

How many MSLT's have you had?

  1. 1 (16 votes [80.00%] - View)

    Percentage of vote: 80.00%

  2. 2 (4 votes [20.00%] - View)

    Percentage of vote: 20.00%

  3. 3 (0 votes [0.00%])

    Percentage of vote: 0.00%

  4. 4 (0 votes [0.00%])

    Percentage of vote: 0.00%

  5. 5 (0 votes [0.00%])

    Percentage of vote: 0.00%

  6. 6 or more (0 votes [0.00%])

    Percentage of vote: 0.00%

How many PSG's have you had?

  1. 1 (7 votes [35.00%] - View)

    Percentage of vote: 35.00%

  2. 2 (6 votes [30.00%] - View)

    Percentage of vote: 30.00%

  3. 3 (6 votes [30.00%] - View)

    Percentage of vote: 30.00%

  4. 4 (0 votes [0.00%])

    Percentage of vote: 0.00%

  5. 5 (1 votes [5.00%] - View)

    Percentage of vote: 5.00%

  6. 6 or more (0 votes [0.00%])

    Percentage of vote: 0.00%

Number of months from 1st sleep study until you were diagnosed?

  1. 1-2 months (9 votes [45.00%] - View)

    Percentage of vote: 45.00%

  2. 3-4 months (1 votes [5.00%] - View)

    Percentage of vote: 5.00%

  3. 5-6 months (1 votes [5.00%] - View)

    Percentage of vote: 5.00%

  4. 7-8 months (1 votes [5.00%] - View)

    Percentage of vote: 5.00%

  5. 9-11 months/ under 1 year (1 votes [5.00%] - View)

    Percentage of vote: 5.00%

  6. 13-18 months/ 1-1½ years (2 votes [10.00%] - View)

    Percentage of vote: 10.00%

  7. 19-24 months/ 1½-2 years (2 votes [10.00%] - View)

    Percentage of vote: 10.00%

  8. 2-3 years (1 votes [5.00%] - View)

    Percentage of vote: 5.00%

  9. 4-5 years (1 votes [5.00%] - View)

    Percentage of vote: 5.00%

  10. 5+ years (1 votes [5.00%] - View)

    Percentage of vote: 5.00%

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#1 slo.mo.a.go.go

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Posted 23 May 2013 - 04:58 AM

Emotionally & financially, there is a lot riding on a single diagnostic tool, the sleep study, but how often does that tool fail to get conclusive results and require retesting? And do the retests add to a substanial amount to the total time waiting for a diagnosis? Can't find any relevant stats online, and since I have the opportunity to ask here, I'm posting this poll. 

 

After reading experiences posted here about the process of getting a Narcolepsy diagnosis, I can't imagine going into a sleep study without that information. There is a profound gap between what I was first expecting (take a sleep study, get an answer/ diagnosis) compared what I expect after reading posts here from people who actually have gone thru the sleep study & N diagnosis process. Being able to mentally prep for what might be a long ride on the diagnosis roller coaster is invaluable.

 

 

*hmmmm, although poll subject fits best in Diagnosis subforum, aren't most who are in this subforum probably in the process of getting dx'd and not those already dx'd


Edited by slo.mo.a.go.go, 07 June 2013 - 07:39 PM.


#2 NetiNeti

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Posted 04 June 2013 - 03:36 PM

I only had one. I am a mental health clinician though, so I pretty much diagnoesed myself and collaborated with my sleep doctor. Finding someone knowelagble (if it is a mental health clinician, social worker, doctor, etc) and working with them is the best. But they have to be knowelagble in the subject.



#3 Bunny23

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Posted 05 June 2013 - 08:42 AM

I had one... but when I saw my sleep doc and we talked it was almost shocking to her that no one did the study earlier. She suspects I had narcolepsy at least 10 years prior, more likely more..

 

The  question is, since narcolepsy seems to have an increase of symptoms where most people finally stop ignoring and go in... (or stop getting diagnosed as depressed etc) is it possible that some people are getting "lucky" and their doctor sends them to a sleep specialist for a study. And if they haven't hit that "obvious narcolepsy" time are they not getting diagnosed?

 

The time before diagnosis is 10 years on average. Maybe people going in at 2 years are not exhibiting "all" the criteria for diagnosis aka It's not bad enough?

 

At least my sleep doc told me that narcolepsy usually peaks, and that's when people call a sleep doctor.

As an example mine was so out of hand I almost got into 3 car accidents in one week, couldn't drive home (had to get a driver!), fell asleep at work multiple times a day, had insomnia where I was getting 2 hours of sleep a night for weeks and finally woke up bashing my head on my kitchen counter! And that's when I called. But before I never even thought of narcolepsy and was diagnosed with major depression!



#4 slo.mo.a.go.go

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Posted 08 June 2013 - 12:11 AM

I only had one. I am a mental health clinician though, so I pretty much diagnoesed myself and collaborated with my sleep doctor. Finding someone knowelagble (if it is a mental health clinician, social worker, doctor, etc) and working with them is the best. But they have to be knowelagble in the subject.

Can you describe the ways your doc is knowledgeable? Any ?'s that you asked that helped you discover that?  I know the difference a good doc makes and have several docs to meet with. I met 1 doc who was knowledgeable abt N but was (maybe?)  too strict in his definitions of HH & cat. My emotions run really high meeting with a new sleep doc & gum up my paper thin executive functioning (ADHD-pi and anxiety) so it's making picking out a good doc for me difficult.

 

A tangent.-

Neti, as a mental health clinician, I loved that you used the words- "collaborated with my sleep doctor."  I've been a mental health patient  over 18 yrs of many experienced & knowledgeable mental health professionals while I worked hard to manage my symptoms. Only my recent 2 docs (both who are youngish) have a collaborative approach & I began and now keep making steady improvement. The prev docs' (who were much older) approach was more distant & I just kept my head above water. I feel collaboration is the reason  I finally made & maintained my progress. Do you think there's been a shift in the training in the medical field to more of a collaborative approach to treatment?   



#5 slo.mo.a.go.go

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Posted 08 June 2013 - 01:18 AM

Thanks much for voting in this poll!

It's easing my anxiety which has reduced enough that I stopped freezing up at calling to get a sleep study scheduled, ending 2 years of being unable to make that call. My psych doc requested I get one over 2yrs ago. Being unable to work and borrowing money to get a study done, I was too scared of this one shot of getting dx failing.

But having the poll votes to reflect on, it's the tool I was looking for so I can scale down my fears and anxieties. Linking my thoughts of getting a sleep study to a series of numbers, there's no emotions getting stirred up unlike the nightmare experience of my friend to get their N dx.



#6 The Dreamer

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Posted 01 July 2013 - 07:44 PM

It was only about 4.5 years from first sleep study to Narcolepsy Diagnosis....but there were 11 years between having the sleep attack while doing 75 Mph (the limit was 70, but the general flow was 75)....which is where I decided there was something wrong with me.

 

I had for years complained of EDS and sleep attacks to doctors...but my first PSG was prompted by scoring a hypertension stage 1 in an office health screening. (which at first my primary was going to dismiss as the screening using a standard cuff rather than a large cuff + white coat syndrome.  But, out of the blue wanted a sleep study, which was the last thing I thought I needed.....)

 

Oh, I had had experience a significant unexplained weight gain the year before.  I have now returned to close to my weight before that unexplained weight gain....

 

The Dreamer.



#7 nictay15

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Posted 16 July 2013 - 12:32 PM

Just received confirmation 7.15.2013 that the mslt on 7.7.13 did confirm narcolepsy.  I have had signs of cataplexy all of my life, it was just written off as clumbsiness so here I am at 45 years old just being diagnosed with a disease that has at times wreaked havoc on my life.

 

Often times doc's have tunnel vision and overly focus on the obvious. As a youth & young adult I found ways to compensate for the narcolepsy. However, in more recent years after death of my youngest sibling (2005), post diagnosis of grave's disease (2006) and working in positions that required me to sit for long hours without much flexibility in schedule etc.; it became glaring something wasn't right.  Only after becoming euthyroid for a year & still feeling extreme exhaustion did they ask about sleep or snoring & have me take the sleep epworth test which is what prompted 1st overnight study.

 

Osa confirmed & abnormal sleep architecture, however sleep studies in the hands of inexperienced doctors won't equate to diagnosis nor further review just the obvious. Long story short changed docs, pulmonologist who wanted to rule out narcolepsy suggested going back for additional studies to determine cause of hypersomnia after a few months on Nuvigil which was October 2012 but it got delayed again due to change in insurance (hmo). 

 

Received referral from primary to neurologist (may 2013) & night/day studies ordered for 7/6 & 7/7/13.  Took 4 naps, after 3rd nap told wouldn't need to stay for 5th, just 1 more.  Osa confirmed again, narcolepsy & mild periodic leg movement disorder which was evident on 1st sleep study in May 2012. Three night & 1 day study narcolepsy confirmed. If day study would've been done a year ago would've gitten same results. I had no trouble what so ever falling asleep on any of the test after going a whole lifetime of being sleep deprived, waking up at stop signs, lights, parked in my car with engine still running & pulled over for bobbing & weaving.  



#8 Hank

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Posted 16 July 2013 - 02:27 PM

You and I have a lot in common. I was diagnosed at 45 after a lifetime of symptoms. It was the missing piece of the puzzle for me- so much suddenly made sense.

I am sorry it took so long. I am glad for you that you finally got the answer. I hope you start to get some relief from knowing.





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