Jump to content


Photo

NEED YOUR INPUT - Quotes about diagnosis


  • Please log in to reply
9 replies to this topic

#1 Shooze

Shooze

    Member

  • Members
  • 28 posts
  • Gender:Not Telling
  • Interests:NIA - fusion fitness because I DEFY the notion that PWN are prone to being overweight.

    LOVE Argentine Tango...learning more and more all the time!

    In 2002 I got real with myself and started on a 3-year journey to fitness and health. I lost 45 pounds and have maintained weight, strength and flexibility for the past three years. I exercise three times a week, dance, eat reasonably, and drink LOTS of water.

Posted 23 April 2008 - 12:01 AM

Did you visit several doctors before getting diagnosed? Or get the WRONG diagnosis over and over? Or spend many years telling your doctor(s) about your sleepiness but didn't get their attention?

I'm collecting specific quotes to use in a letter campaign to physicians in my area....and maybe beyond. Please help me by sending me your completion of the following statement:

If I had been diagnosed earlier, I would have________________________

This is how I will use your sentence:

I want doctors to start asking patients about sleep. This is talked about at the national level - has been talked about for quite a few years, but it seems that all the boards, committees and agencies want to either set policy, legislate or fund formal programs to get across a rather uncomplicated and simple message: Doctors...Ask your patients about their sleep!

So...I'm starting my own campaign by drafting a "Dear Doctor" letter. In it I will simply and plainly explain why I believe all doctors should ask patients about the quality of their sleep. "Hey...if we can get an entire nation to STOP Smoking...we can get an entire nation to START sleeping!" -- quote, Ann Austin

Every payday, I will buy one book of stamps and dedicate it to mailing 20 letters to doctors in my area. I'll start with the general family practice docs and work into the specialties. If this catches on...if you like the idea, I will send you the letter to send to doctors in your area!

This is how I need your help: To accompany the letter, I will include a sheet of statements from YOU - those who submit. The statements may be something like:

Examples:
If I had been diagnosed earlier, I would have finished my Ph.D. -- Ann, Narcolepsy, Symptom Onset: age 8, Diagnosed: Age 37

If I had been diagnosed earlier, I would have been able to keep my job. -- Jack, Obstructed Sleep Apnea, Symptom Onset: age 36, Diagnosed: Age 47

If I had been diagnosed earlier, I would have remembered to turn the stove off and prevented the fire that destroyed half my home. -- Laurie, Insomnia, Symptom Onset: age 27, Diagnosed:Age 34

If I had been diagnosed earlier, I would have laughed at my children's jokes and cried at my daughter's wedding...without falling down. -- Ruth, Narcolepsy with Cataplexy, Symptom Onset: age 17, Diagnosed: Age 48

PLEASE SEND:

Your quote/sentence completion
Your first name ONLY...or a fake first name
Your diagnosis
Age of symptom onset
Age of diagnosis

And finally...everyone with Narcolepsy knows several people with other sleep disorders. Please ask your family and friends to particpate so that the Dear Doctor letter can represent all sleep disorders.

Thanks!! Ann Austin

#2 Chuck Z.

Chuck Z.

    Member

  • Members
  • 150 posts
  • Gender:Male
  • Location:Philadelphia Area
  • Interests:Music, Photography

Posted 23 April 2008 - 07:37 AM

If I may interject rolleyes.gif

From my very long experience of being tagged a hypochondriac (because I continually complained), or being depressed (because I was always tired), or borderline/schizo (because I "saw things" at night), or epileptic (because I chonically lost seconds of time), or parkinsons sufferer (because I "rumbled" and lost balance), or a drug addict/alchoholic (because I had nystagmus and my EEG's always show high beta activity), or high anxiety (because I would break into sweat for no appairent reason or become extremely cold) -- wow, that was a lot, LOL, but I digress! I have come to a realization. Only after being diagnosed, did everything fall into place.

I've had a few friends over the years involved in the medical community. I myself have been involved in pharma for over 15 years and have been involved in data collection of clinical trials, and outcomes. Docs are taught to look for the "obvious" first. 99.999% of the time, this works out fine. Many common conditions can be "easily diagnosed" by indicators such as blood counts and obvious physical manifiestations such as rash, discolorations or acute localized pain.

The most prominant symptom of Narcolepsy is simply being tired. So, the obvious that a doc would do is demand that the patient get more sleep. Only the "lucky" ones have cat to indicate the obvious, but the rest have a long road ahead because each symptom on it's own can indicate something else. It is prudent for docs to wade through all of the "obvious" first -- it is simply is good medicine. To be fair to the docs, if they were expected to "hyperdiagnose" every patient that came through their door, they'd quit medicine within of week of beginning practice wink.gif

Narcolepsy is extremely rare! Think about it -- 50k diagnosed in the U.S., I think we're at around 400 million now, that makes for about 1 in 8,000 with the diagnosis. Each doctor, being liberal may have 500 patients they see in their own practice. That makes the odds that a single doc will have a narcoleptic in their practice to about 1 in 16. Docs are put through the paces during school and internship - trust me, if they make it through, they want to help! Don't blame them for the long road.

With that said, I think what really needs to be done is to create access to tests that are not so subjective, eg. the latency test. That's essentially a "crap shoot". I know there are weeks where I can sleep with normal dreaming on monday, tues not sleep at all, wednesday have "power naps" with extremely vivid dreams, and thursday not dream at all and wake up with a 'hangover' and have difficulty standing and shaking lasting an hour after waking.

Absolute "qualifiers" for symptoms is what's needed. Hypocretins seems to be a hope. With feedback from patients and caregivers, possibly other qualifiers can be found. If we "confront" our docs with "FU, why didn't you know!?!, then we burn an extremely valuable bridge. Communication is key, confrontation is a guarentee to lose out.

I have printed out the following and have it taped to my bathroom wall so I see it more than once every single day:

NEVER ASSUME THAT OTHERS ARE OBLIGATED TO UNDERSTAND YOU

All here are a very rare breed! Most of the time, folks will NOT understand you, accept it. When I started assuming that folks did not understand me, I found myself less confrontational, more at ease with myself, and having a calmer mindset, I found it much easier to "work through" social situations and I have gained greater respect from those around me. It fascinates me that now that I do not put demands on others, but i continually try to do my best in situations, folks voluntarily help out when I really need it, e.g. not complaining when I say, i'm taking a nap, LOL, or I don't feel like going out and they reschedule.

Understand, this is *my* mindset and I'm not trying to force this approach on others, but I have found this perspective to be most helpful for me rolleyes.gif

Chuck...





#3 kogeliz

kogeliz

    Member

  • Members
  • 45 posts
  • Gender:Female
  • Location:Knoxville, TN
  • Interests:adhering googly eyes to random objects

Posted 23 April 2008 - 07:40 AM

Where do we send it to?
Post here?


#4 Shooze

Shooze

    Member

  • Members
  • 28 posts
  • Gender:Not Telling
  • Interests:NIA - fusion fitness because I DEFY the notion that PWN are prone to being overweight.

    LOVE Argentine Tango...learning more and more all the time!

    In 2002 I got real with myself and started on a 3-year journey to fitness and health. I lost 45 pounds and have maintained weight, strength and flexibility for the past three years. I exercise three times a week, dance, eat reasonably, and drink LOTS of water.

Posted 24 April 2008 - 05:30 PM

QUOTE (Chuck Z. @ Apr 23 2008, 07:37 AM) <{POST_SNAPBACK}>
If I may interject rolleyes.gif

From my very long experience of being tagged a hypochondriac (because I continually complained), or being depressed (because I was always tired), or borderline/schizo (because I "saw things" at night), or epileptic (because I chonically lost seconds of time), or parkinsons sufferer (because I "rumbled" and lost balance), or a drug addict/alchoholic (because I had nystagmus and my EEG's always show high beta activity), or high anxiety (because I would break into sweat for no appairent reason or become extremely cold) -- wow, that was a lot, LOL, but I digress! I have come to a realization. Only after being diagnosed, did everything fall into place.

I've had a few friends over the years involved in the medical community. I myself have been involved in pharma for over 15 years and have been involved in data collection of clinical trials, and outcomes. Docs are taught to look for the "obvious" first. 99.999% of the time, this works out fine. Many common conditions can be "easily diagnosed" by indicators such as blood counts and obvious physical manifiestations such as rash, discolorations or acute localized pain.

The most prominant symptom of Narcolepsy is simply being tired. So, the obvious that a doc would do is demand that the patient get more sleep. Only the "lucky" ones have cat to indicate the obvious, but the rest have a long road ahead because each symptom on it's own can indicate something else. It is prudent for docs to wade through all of the "obvious" first -- it is simply is good medicine. To be fair to the docs, if they were expected to "hyperdiagnose" every patient that came through their door, they'd quit medicine within of week of beginning practice wink.gif

Narcolepsy is extremely rare! Think about it -- 50k diagnosed in the U.S., I think we're at around 400 million now, that makes for about 1 in 8,000 with the diagnosis. Each doctor, being liberal may have 500 patients they see in their own practice. That makes the odds that a single doc will have a narcoleptic in their practice to about 1 in 16. Docs are put through the paces during school and internship - trust me, if they make it through, they want to help! Don't blame them for the long road.

With that said, I think what really needs to be done is to create access to tests that are not so subjective, eg. the latency test. That's essentially a "crap shoot". I know there are weeks where I can sleep with normal dreaming on monday, tues not sleep at all, wednesday have "power naps" with extremely vivid dreams, and thursday not dream at all and wake up with a 'hangover' and have difficulty standing and shaking lasting an hour after waking.

Absolute "qualifiers" for symptoms is what's needed. Hypocretins seems to be a hope. With feedback from patients and caregivers, possibly other qualifiers can be found. If we "confront" our docs with "FU, why didn't you know!?!, then we burn an extremely valuable bridge. Communication is key, confrontation is a guarentee to lose out.

I have printed out the following and have it taped to my bathroom wall so I see it more than once every single day:

NEVER ASSUME THAT OTHERS ARE OBLIGATED TO UNDERSTAND YOU

All here are a very rare breed! Most of the time, folks will NOT understand you, accept it. When I started assuming that folks did not understand me, I found myself less confrontational, more at ease with myself, and having a calmer mindset, I found it much easier to "work through" social situations and I have gained greater respect from those around me. It fascinates me that now that I do not put demands on others, but i continually try to do my best in situations, folks voluntarily help out when I really need it, e.g. not complaining when I say, i'm taking a nap, LOL, or I don't feel like going out and they reschedule.

Understand, this is *my* mindset and I'm not trying to force this approach on others, but I have found this perspective to be most helpful for me rolleyes.gif

Chuck...


#5 Shooze

Shooze

    Member

  • Members
  • 28 posts
  • Gender:Not Telling
  • Interests:NIA - fusion fitness because I DEFY the notion that PWN are prone to being overweight.

    LOVE Argentine Tango...learning more and more all the time!

    In 2002 I got real with myself and started on a 3-year journey to fitness and health. I lost 45 pounds and have maintained weight, strength and flexibility for the past three years. I exercise three times a week, dance, eat reasonably, and drink LOTS of water.

Posted 24 April 2008 - 05:45 PM

Chuck Z,

I'm with you 100 %. If you had (or maybe you did) attended my session on Advocacy in Albany a few weeks ago, my message was a carbon copy of your message.

But...here's the deal. We KNOW that N is rare. We KNOW the the likelihood that a sleepy person is a PWN is really rare. BUT, if we can just get doctors to screen for sleep issues IN GENERAL, we will then get to the PWN.

I am more of an advocate for Sleep than an advocate for Narcolepsy. It just makes more sense. If I spend my time trying to find PWN, I'm wasting my time. If I spend my time telling people what normal sleep is - raising awareness, educating - there is a higher liklihood that they will tell their doctors.

Additionally, if I can have an impact on doctors about how sleep disorders (all 85 of the) impact lives, maybe I'll get a few to start asking about sleep as one of the main screening questions. (We've got the CDC doing this in 12 states now...and hope to add another 12 this year if funding comes through.) Just asking the question raises awareness and it is then that the dialogue can start. And yes, in most cases a sleepy person is simply sleepy - burning the candle at both ends. But when a doctor makes it a cornerstone of health - when a doctor makes it a health issue, patients are more likely to listen. "You must nap...doctor's orders!"

If you'll go back and read my post, I'm looking for statements from PWN and other sleep disordered folks. My examples even reflect the variety.

So...who do you know who can tell me how the lack of sleep impacted their life...who ISN'T a PWN? And by the way, what is your Cliff note version? Your opening paragraph may be too wordy to have the PR impact that I'm suggesting.

Thanks!

#6 Shooze

Shooze

    Member

  • Members
  • 28 posts
  • Gender:Not Telling
  • Interests:NIA - fusion fitness because I DEFY the notion that PWN are prone to being overweight.

    LOVE Argentine Tango...learning more and more all the time!

    In 2002 I got real with myself and started on a 3-year journey to fitness and health. I lost 45 pounds and have maintained weight, strength and flexibility for the past three years. I exercise three times a week, dance, eat reasonably, and drink LOTS of water.

Posted 24 April 2008 - 05:48 PM

QUOTE (kogeliz @ Apr 23 2008, 07:40 AM) <{POST_SNAPBACK}>
Where do we send it to?
Post here?



I think you can post here or you can post directly to me in a private message? I'm Shooze. New to this, so am not too sure how the private versus public postings work. unsure.gif

#7 MOE2626

MOE2626

    Member

  • Members
  • 8 posts
  • Interests:SPENING TIME WITH MY FAMILY, READING, CARRIBEAN VACATIONS

Posted 29 April 2008 - 04:53 PM

I WOULD HAVE....BENN ABLE TO LIVE MY LIFE ( NOT JSUT EXIST!)
MAUREEN FROM MASS
FIRST ONSET...15 YRS OLD
DIAGNOSED AFTER 26 YEARS!

#8 Chuck Z.

Chuck Z.

    Member

  • Members
  • 150 posts
  • Gender:Male
  • Location:Philadelphia Area
  • Interests:Music, Photography

Posted 30 April 2008 - 09:47 AM

QUOTE (Shooze @ Apr 24 2008, 06:45 PM) <{POST_SNAPBACK}>
Chuck Z,

I'm with you 100 %. If you had (or maybe you did) attended my session on Advocacy in Albany a few weeks ago, my message was a carbon copy of your message.

But...here's the deal. We KNOW that N is rare. We KNOW the the likelihood that a sleepy person is a PWN is really rare. BUT, if we can just get doctors to screen for sleep issues IN GENERAL, we will then get to the PWN.

I am more of an advocate for Sleep than an advocate for Narcolepsy. It just makes more sense. If I spend my time trying to find PWN, I'm wasting my time. If I spend my time telling people what normal sleep is - raising awareness, educating - there is a higher liklihood that they will tell their doctors.

Additionally, if I can have an impact on doctors about how sleep disorders (all 85 of the) impact lives, maybe I'll get a few to start asking about sleep as one of the main screening questions. (We've got the CDC doing this in 12 states now...and hope to add another 12 this year if funding comes through.) Just asking the question raises awareness and it is then that the dialogue can start. And yes, in most cases a sleepy person is simply sleepy - burning the candle at both ends. But when a doctor makes it a cornerstone of health - when a doctor makes it a health issue, patients are more likely to listen. "You must nap...doctor's orders!"

If you'll go back and read my post, I'm looking for statements from PWN and other sleep disordered folks. My examples even reflect the variety.

So...who do you know who can tell me how the lack of sleep impacted their life...who ISN'T a PWN? And by the way, what is your Cliff note version? Your opening paragraph may be too wordy to have the PR impact that I'm suggesting.

Thanks!


I hear ya! smile.gif

I'm trying to look at the bigger picture. Sure, with some meds and newly found energy and focus, I can begin writing new music again. I can persue my photography more agressively. I can be more engaged socially with my friends and family. But, if I start asking "what if" I was diagnosed years ago and would have to ask myself -- would I have had the true friendships that I had if I was not so "quirky" all these years? (I almost find it an advantage being a little "off" because I truely know who my friends are).

So, hypothetically, if I was diagnosed at birth...

(Thankfully, I was able to recover my records from 65 to 73, born in 65, from micofish). I was essentially "asleep" for the first two years of my life. A continuing theme of notes was that i was unresponsive to stimulous and refused to open my eyes. As a result, i was placed in a home for the mentally and physically handicapped, but thankfully I was adopted at age 8. If I was diagnosed then, I would not have been adopted by a loving single mom, instead I would have grown up with an alchoholic father and a meth-crazed mother. As an aside, I invite you to google "where's molly" -- it is my story as well.

Having a very difficult time during my elementary years with regard to social interaction, my adoptive mother pulled all of her resources and payed for me to attend a private faith-based school where most were much more tolerant. Classes were much more advanced than public school so I won out with some smarts (I am now currently a member of mensa). If I had been diagnosed during that time, I probably would have just stayed in public school, not realizing my potential. Maybe I would have, who knows?

I could go on and on about forks in the road and life choices I have made. If given the chance, I would not change anything. Being diagnosed is somewhat life-altering, and admittedly, it has caused me to have some doubts about the future. Sometimes, ignorance is bliss, and at least in my case, I feel everything worked out fine.

I guess, ultimately, my point is what I have pasted to my bathroom wall for me to read every day: "Never assume that others are *obligated* to understand you". To chastize docs by "guilt trips" of "if only I was diagnosed earlier" simply goes against the grain. Awareness is good, but it is my humble opinion that there may be a different way to approach the issue.

I stand by my previous post -- docs must follow diagnostic process -- the obvious must be ruled out. Unfortunately, sleep disorders present in such a way to suggest many other obvious possibilities and it simply takes time to rule everything else out.

To answer the obvious question -- then, what else? How about a monopathogenic test? blood work to check for lack of enzymes? Would it too expensive for insurance to readily pay for? How could the cost be mitigated? Assuming the long diagnostic path, at which points could other possibilities be suggested? e.g. my own "syncope", was there a "keyword" that I used to describe it that would easily eliminate epilepsy, ADD, or whatever and suggest a sleep disorder?

Please don't hate me for being so opinionated, but I only offer up the truth as I perceive it. Accept it or reject it, it's your perogative. Ultimately, and I apologize for being point blank, my point is this: Awareness should be gained by good science and good education, not by subjective "guilt trips".

#9 greatbig47

greatbig47

    www.newrolemodels.com

  • Members
  • 553 posts
  • Gender:Male
  • Location:Greenville, Michigan

Posted 30 April 2008 - 10:39 AM

QUOTE (Chuck Z. @ Apr 30 2008, 10:47 AM) <{POST_SNAPBACK}>
"Never assume that others are *obligated* to understand you". To chastize docs by "guilt trips" of "if only I was diagnosed earlier" simply goes against the grain. Awareness is good, but it is my humble opinion that there may be a different way to approach the issue.

I stand by my previous post -- docs must follow diagnostic process -- the obvious must be ruled out. Unfortunately, sleep disorders present in such a way to suggest many other obvious possibilities and it simply takes time to rule everything else out.

To answer the obvious question -- then, what else? How about a monopathogenic test? blood work to check for lack of enzymes? Would it too expensive for insurance to readily pay for? How could the cost be mitigated? Assuming the long diagnostic path, at which points could other possibilities be suggested? e.g. my own "syncope", was there a "keyword" that I used to describe it that would easily eliminate epilepsy, ADD, or whatever and suggest a sleep disorder?


Yeah...so true.

I like the lines you think along, Chuck.

I am so thankful for the hard work Shooze is doing. I know she is a strong force that's good to have on your side when needed.

It seems like there could/should be a way that got the point across that didn't seem so whiney and complaining. There are some mighty bright people with this condition (note I NEVER use the term disability). If playing the victim means getting the right medication to the right kids who have been fed the wrong medication, I'll do it. It's a stupid political dance, but if it keeps one kid with narcolepsy from having to suffer a Zyprexa experience, I'd be okay with it.

But wouldn't it be nice to see something more straight-forward that got results?
(not a hypothetical question) And if so, what? Maybe more of a demonstrative approach?
Maybe pointing out the price of a mis-diagnosis?

But then again, I just brought us back on topic.

I think there's a win-win situation close at hand. I'm open to it. We'll never find it if we don't look for it.
What do you think?

-Stu


#10 Chuck Z.

Chuck Z.

    Member

  • Members
  • 150 posts
  • Gender:Male
  • Location:Philadelphia Area
  • Interests:Music, Photography

Posted 30 April 2008 - 05:08 PM

Agreed, but I have to keep falling back to the doc's point of view. They care and they do the best they can within their realm of experience -- which goes back again to the point of education. Attempting to quantify the cost of misdiagnosis does not help if the doc simply does not have the knoweledge. With that said, I think the most important audience to advocacy would be teaching hospitals and medical schools -- not the doctor who "finally" diagnosed. I would imagine, after the first case, the doctor involved would be more keen to look at sleep as a possibility. Those that have never seen a case need to be made aware, and that's where targeting med schools could be a good thing?