Schedule of ratings for neurological conditions and convulsive disorders

StacyD

PEB Forum Regular Member
Used to be Army Strong: I hope you are still on here!! I would like to know what your outcome was.

If not, is there anyone else with Narcolepsy who has been through an MEB/PEB?

I was just diagnosed last month by a civilian doctor because Walter Reed was too backed up to get me in for a sleep study. I am currently waiting for an appointment with the sleep doc at WRAMC to evaluate my current treatment and start the MEB process.

I do not have cataplexy with my narcolepsy (probably because I also take Effexor) which makes it difficult to predict the MEB/PEB outcome. I am very anxious about what may happen. I have a "desk job" but I am a shift worker and my narcolepsy is severe enough to impair my ability to work and my duties to my family (husband and 2 young children). Does the board make decisions with empathy, or only based on the regs? The regulations are inaccurate and confusing; narcolepsy should not be evaluated as epilepsy, especially for those without cataplectic episodes. I take 30mg of Adderall XR but it does not always keep me awake. I probably shouldn't be driving, but have no choice on that right now. On my bad days I also experience dementia somewhat like what an Alzheimer's patient has; I am unable to comprehend spoken and written language. My biggest concern is continuing to take care of my family. My husband has a good job, but there is no way we could live on his income alone considering my income puts the roof over our head and pays for my family's medical insurance.

I guess I'm looking for anyone who can provide some advice or insight. Should I send a letter to the board right off the bat pleading my case? I don't want to sound whiny, but I feel they should know how much this has negatively impacted my life. Or should I just wait for the decision of the informal board and appeal with a lawyer if necessary?

I have almost 8 years of active duty. My ETS is Dec 2010 so I don't have long left if they decide not to put me out, I just need to know that I and my family will be taken care of. I need to work, but I don;t know what capacity I will be capable of.

Also, if anyone has narcolepsy, did you receive any sort pf physical profile for it? I am currently fat and can't pass a PT test but I can't do PT because it wipes me out. I am in a joint assignment with no unit PT so I've just been avoiding it.

Also, please don't give me any grief, I used to be a good soldier.
 

Krickett

Member
Registered Member
I too have narcolepsy however i DO have the narcolepsy with cataplexy diagnoses... I do not frequently fall out.. i do however occasionally wake up inable to move... im the opposite end of the spectrum i used to think i wasnt ever sleeping or rarely sleeping when in fact my body was my brain wasnt.. narcolepsy is when your hypothalymous doesnt produce the chemicals needed to regulate a normal sleep cycle.. my concern is this whole classifying it as epilepsy thing? i feel that is entirely unfair.. also i have previously had labral tear repair/synovectomy/ect on my left hip post deployment, and now we have switched to humana north and suddenly its not a covered thing? ive been dealing with this since Feb 2011 when i returned from deployment, and now that i am in WTU, and was VERY recently (once i was already IN WTU) received the narcolepsy dx it seems all anyone gives a damn about is kicking me out... they dont seem interested in fixing any of the original issues i was having , and they have had ME so stressed to my maximum ability to comprehend that i have now become underweight... not from not eating but just because im so stressed... its bad enough that a previous ABH provider was SO focused on accusing me of having an eating disorder that he never got me the PTSD treatment i was sent to him FOR. Now im being referred back to the Dr. i was supposed to see when i requested a second opinion and was denied.. but they still are denying my surgery.. unless i wait until september to go to washington (flying isnt high on my list of cool things i can handle right now and neither is going to some strange place by myself) from ft. campbell in september to RESTART the evaluation of my hip. Not to mention that PCM also took me off my pain meds almost immediately , completely disregarded the surgeons specific orders that my profile be for physical therapy for pt only and no standing for more than 10-15 minutes ect. threatened to take away my driving privledges, and so much more. The worst part about this whole thing is now lately it seems like i have HUGE memory gaps... i lose almost all memory of an entire day sometimes... its unnerving because i used to have the most impeccable almost photographic memory... this is completely destroying my life, and from what ive been reading it seems like im lookiung at what..0%..wtf?
 

subtleXplosion

Member
Registered Member
You both sound really stressed and I can see why. I'm stressed out about my narcolepsy diagnosis too, but I'm trying to find a way to stay in as a nurse. I have narcolepsy with cataplexy which is controlled by the medication they gave me, but according to AR 40-501 narcolepsy is a dibilitating neurologic condition that makes a soldier unfit for duty and a safety hazard to others/the mission. However, if the commanding officer is willing to write a waiver stating the soldier is capable of completing their duties, medical separation can be avoided.

Do NOT go to the board and plead. [hopefully, you read this in time]. They don't want to hear that. You will sound whiny and while they may feel sympathy for you, they must follow regulation. If they feel you are unfit for the position, they will not approve your stay. You do need to appeal to why the Army needs you or why it would be a loss to the military if they let you go. If I were you, I'd be working with my Army doctor to get me some meds that sufficiently control the condition. If your condition is not controlled and you can not complete your duties, then you do need to be released. You said you're taking adderal; have you tried Provigil or Nuvigil yet? There are a couple more meds out there, but these 2 have the least side effects. Lots of militaries use them for pilots and soldiers on long missions. I'm on Provigil and it has literally given me my life back. It sounds cheesy, but now that I don't spend so much time sleeping, I realize how much of my day was wasted. I'm now far more productive.

They do issue you a profile. I currently have a temporary profile that is about to expire that grants me 15 minute naps when I like and must work regular day shifts for no more than 12 hours, but that is never observed by my command. It does prohibit me from carrying a weapon and evading direct fire which are essential for deployment. If I can't deploy, I am no good to the Army. If this were a permanent profile, then I would be required discharge.

Krickett, it sounds like your command is not very supportive of your desires, but it does sound like they are working as your advocate. Having memory gaps where you forget a whole day is a very big deal. The narcolepsy diagnoses hardly seems important when you have things like necessary surgery and PTSD to consider. Delay the MEB/PEB process until you can get an Army doctor to listen and actually care for you. You are the only one who will ensure your needs are met, so you can't let them ignore your issues. Once they release you, and your issues are still not addressed, you are on your own. They MUST care for your service related injuries/conditions. They can't prove narcolepsy is service related and it is currently not accepted to be, so it is likely you will get 0-10% for that. Get on some good meds that ARE covered. As a patient, you have a right to take part in your care and it should be encouraged. Ask for the medication you think would be most beneficial. Point out that ibuprofen isn't cutting it for your pain. I know it's not what you want to hear, but deployment and a career in the Army is probably not the best thing for you. Get the care you need [THOROUGHLY!] and make sure the board gives you the percentages you deserve so you may continue to receive care as a Veteran.

I hope this helps you or anyone else who reads this.
 

StacyD

PEB Forum Regular Member
So, in the 3 years since I made that post... I went through additional testing because the doc at Walter Reed did not believe the initial diagnosis. I have been through several medications and have found that 250mg of Nuvigil works. I've been on that med/dose for almost 2 years and don't seem to be building tolerance the way I did with all the others. VA rated me 60% for the narcolepsy and I was medically retired. I think this was the best for me. I have a great job and while it is still a challenge to balance my medical condition with life in general, I am doing well enough.
 
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