AD Air Force With Narcolepsy.

J

Jon5566

Well-Known Member
PEB Forum Veteran
Registered Member
27JAN: PCM notifies me that narcolepsy requires MEB
10 FEB: Notified by PEBLO about Pre- Ides Screening
17 FEB: Met with PCM to give her more information about how it affects me and to notify her that i should probably be put on a waiver due to how dangerous this can be in my job (she didnt really seem to care and notified me that shes behind and this my NARSUM is going to take a while)
09 MAR: (NARSUM DUE DATE)Contacted PCM to see if there was any progress made on the NARSUM and got a reply from someone else stating " Per PCM:"NARSUM needs to be submitted by PCM. Patient will be notified when complete."
21 MAR: Emailed PCM for an update and got emailed by someone else saying " Per PCM: ''When your NARSUM is complete it will be submitted to PEBLO. There PEBLO is able to give update whether NARSUM is submitted or not. To answer your question your NARSUM was not submitted as of today 22 Mar 22.''
 
Late NARSUM is not unusual. Doctor is up here

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PEBLO s down here in the pecking order.
 
chaplaincharlie said:
Late NARSUM is not unusual. Doctor is up here

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PEBLO s down here in the pecking order.
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From what i have been told NARSUM is almost always late due to other things that need to get done first. But what doesnt sit right wit me is the PCM I have does not have a good track record and does not seem to care.
 
I gathered you were not happy with your PCM. Have you asked the patient advocate for a new PCM?

My NARSUMs the first and second time through the PEB process were different. Both were good docs, but one was more collaborative with the NARSUM while the other was more collaborative about the care plan. My second NARSUM had to be re-written by directive of the PEB, which makes me wonder how important the NARSUM is to the process.
 
I have called the patient advocate a few times and left messages they dont get back to you and i also learned by pcm is getting out of the military very soon so i dont know whats going to happen with it now. I called and talked to a different pcm(civilian) for advice on the situation and expressed concern that i feel as if it might not get done then was yelled at by that pcm and told to respect the rank of my pcm. It seems as if everywhere i turn its more about someone's rank than someone's health.
 
I would document every encounter you have made with a Memo For the Record (MFR). Sign and date each one, using a witness to your signature. Once you have pattern DOCUMENTED, file an IG complaint.

Many years ago, an AF meteorologist, was sent to courts martial for dereliction of duty. He was accused of failing to notify the officer of the day of imminent inclement weather. Birds got bent sitting on the ramp during the subsequent strorm. The officer of the day lied. The meterologist had written a MFR and used a timestamp machine to document the call. Neeedless to day he was aquited. Their aren't to many time stamp machines anymore, so a witness or digital signature program are essential on a MFR.
 
It doesn't matter who wins the first round or two, unless you quit.
 
chaplaincharlie said:
I would document every encounter you have made with a Memo For the Record (MFR). Sign and date each one, using a witness to your signature. Once you have pattern DOCUMENTED, file an IG complaint.

Many years ago, an AF meteorologist, was sent to courts martial for dereliction of duty. He was accused of failing to notify the officer of the day of imminent inclement weather. Birds got bent sitting on the ramp during the subsequent strorm. The officer of the day lied. The meterologist had written a MFR and used a timestamp machine to document the call. Neeedless to day he was aquited. Their aren't to many time stamp machines anymore, so a witness or digital signature program are essential on a MFR.
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25 APR: PCM has passed in NARSUM!!!!!

Also do you know how disability with narcolepsy works its under epilepsy and each rating says you have to have seizures because narcoleptic people dont have seizures so thats a little confusing?
 
Jon5566 said:
25 APR: PCM has passed in NARSUM!!!!!

Also do you know how disability with narcolepsy works its under epilepsy and each rating says you have to have seizures because narcoleptic people dont have seizures so thats a little confusing?
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AD USN. From what I understand they treat each narcoleptic or cataplexy episode as a small seizure. I just got my DBQ back for Narcolepsy, it definitely had the wrong box checked saying I get 0-4 narcoleptic episodes per week, so I sent in a personal statement to counter that.
 
sandsailor said:
AD USN. From what I understand they treat each narcoleptic or cataplexy episode as a small seizure. I just got my DBQ back for Narcolepsy, it definitely had the wrong box checked saying I get 0-4 narcoleptic episodes per week, so I sent in a personal statement to counter that.
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so they go by how many sleep attacks you have?
 
Jon5566 said:
so they go by how many sleep attacks you have?
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exactly. sleep attacks and cataplexy episodes.

first you need the confirmed diagnosis which can be via PSG/MSLT, labwork, or medication. During the C&P they confirmed mine through my medication history (Xyrem is used exclusively to treat Narcolepsy with Cataplexy) because QTC did not have access to my PSG/MSLT which initially diagnosed me with Narcolepsy type 1 (N w/cataplexy).

From how I understand it it is rated:

> 10 per week = 80%
9-10 per week = 60%
5-8 per week = 40%
0-4 per week = 20%

On the other hand, I've read through various sources, including law blogs, that Narcolepsy is almost always rated 80%....but I don't trust this as accurate. I've seen several people report they were rated lower for Narcolepsy and what I listed above is in line with the rating criteria and DBQ forms. Unfortunately for me, they incorrectly marked 0-4 per week, when I have 2-4 episodes per day. I sent in a personal statement outlining my symptoms, their impact and clearly stating that I have at least 15 episodes a week. Hopefully those statements carry some weight; I don't think the general examiners (at least mine) fully understand Narcolepsy as it's an uncommon condition.
 
sandsailor said:
exactly. sleep attacks and cataplexy episodes.

first you need the confirmed diagnosis which can be via PSG/MSLT, labwork, or medication. During the C&P they confirmed mine through my medication history (Xyrem is used exclusively to treat Narcolepsy with Cataplexy) because QTC did not have access to my PSG/MSLT which initially diagnosed me with Narcolepsy type 1 (N w/cataplexy).

From how I understand it it is rated:

> 10 per week = 80%
9-10 per week = 60%
5-8 per week = 40%
0-4 per week = 20%

On the other hand, I've read through various sources, including law blogs, that Narcolepsy is almost always rated 80%....but I don't trust this as accurate. I've seen several people report they were rated lower for Narcolepsy and what I listed above is in line with the rating criteria and DBQ forms. Unfortunately for me, they incorrectly marked 0-4 per week, when I have 2-4 episodes per day. I sent in a personal statement outlining my symptoms, their impact and clearly stating that I have at least 15 episodes a week. Hopefully those statements carry some weight; I don't think the general examiners (at least mine) fully understand Narcolepsy as it's an uncommon condition.
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thank you for the information! i have narcolepsy with cataplexy and i have at least 4 attacks a day i started to write them in a log actually
 
Yes, the attacks and the frequency are what they consider in rating you:

Service connection for narcolepsy is proposed as directly related to military service. (38 CFR
3.303, 38 CFR 3.304)
We have assigned an 80 percent evaluation for your narcolepsy based on:
• More than ten minor seizures weekly (38 CFR 4.124a)
Additional symptom(s) include:
• At least two minor seizures in the last six months
• Continuous medication is shown necessary for the control of epilepsy (38 CFR 4.124a)
A higher evaluation of 100 percent is not warranted for narcolepsy unless the evidence shows an
average of at least one major seizure per month over the last year. (38 CFR 4.120, 38 CFR 4.121,
38 CFR 4.122, 38 CFR 4.124a)

I am doing a VAAR and FPEB for the 100 percent Narcolepsy and the combat relatedness of my PTSD
 
essexr said:
Yes, the attacks and the frequency are what they consider in rating you:

Service connection for narcolepsy is proposed as directly related to military service. (38 CFR
3.303, 38 CFR 3.304)
We have assigned an 80 percent evaluation for your narcolepsy based on:
• More than ten minor seizures weekly (38 CFR 4.124a)
Additional symptom(s) include:
• At least two minor seizures in the last six months
• Continuous medication is shown necessary for the control of epilepsy (38 CFR 4.124a)
A higher evaluation of 100 percent is not warranted for narcolepsy unless the evidence shows an
average of at least one major seizure per month over the last year. (38 CFR 4.120, 38 CFR 4.121,
38 CFR 4.122, 38 CFR 4.124a)

I am doing a VAAR and FPEB for the 100 percent Narcolepsy and the combat relatedness of my PTSD
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Not rated yet but got the DBQ from my C&P back. I’m hoping mine is rated as connected to my TBI, especially since the TBI is noted by my sleep pulmonologist in their paperwork. What would constitute a major seizure for Narcolepsy?
 
sandsailor said:
Not rated yet but got the DBQ from my C&P back. I’m hoping mine is rated as connected to my TBI, especially since the TBI is noted by my sleep pulmonologist in their paperwork. What would constitute a major seizure for Narcolepsy?
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Several Cataplectic events can equal a major seizure. 25-30 cataplectic events a week. Are you type 1 or type 2? Type 1 is with cataplexy and type 2 is without.
 
essexr said:
Several Cataplectic events can equal a major seizure. 25-30 cataplectic events a week. Are you type 1 or type 2? Type 1 is with cataplexy and type 2 is without.
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I'm Type 1 Narcolepsy w/cataplexy. 2-4/day is what I wrote in my lay statement. For whatever reason the QTC examiner wrote down 0-4/week on my Narcolepsy DBQ which is completely wrong. But put that I needed continuous medication and notes I was prescribed Xyrem.
 
22 April 2022: package sent to AFPC
23 May 2022: was told AFPC is backed up and the turn around is 30 days
 
Jon5566 said:
22 April 2022: package sent to AFPC
23 May 2022: was told AFPC is backed up and the turn around is 30 days
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So, still haven't gotten your package back from AFPC?

Mine got sent on the April 22nd as well and received it back on May 18th. My peblo told me that if it goes past 30 days then they can email afpc for a status update
 
Yeah as of right now there are four people I work with that haven’t heard back. I’ll have to shoot an email to the PEBLO tomorrow
 
31 July: Went on MPF and found that AFPC came back with the decision of a ALC C2 code for my narcolepsy. Reviewed the packet that was sent up by my pcm and wow it was missing so much information and also had incorrect information.

As of right now i got in contact with the patient advocate and contacted the ODC for some assistance in this. With that i have an appointment with a new pcm to try and redo the packet. Very disappointed with how i was treated during my process.
 
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