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Greg,

Please email me privately; I have the name of another e-group that gives great advice on disability and Social Security. I'm sure things are different considering you are dealing with the military, but the responses I've read so far are right on target - consult an attorney who specializes in disability insurance issues. If you haven't done so already, apply for Social Security Disability. Expect to be denied; then appeal and be denied again; then you should go in front of a judge for a decision. That's just the way it is, and attorneys who deal with Social Security Disability will handle your case free of charge until you are approved; then they receive a percentage of your back-due benefits, and it's nothing close to the 30-40% that attorneys usually get.

Also, start documenting everything! Have copies of your sleep study, the doctor's summary, the letter from the military that said you were "unfit for duty" and the one which denied you being disabled. (That in itself is ridiculous, but it's what those of us with "invisible" illnesses have to face all of the time.) Also, if you have any telephone conversations concerning this, either immediately write down the date, time, and as much of the conversation as you can OR state that you will not discuss the issue over the phone; everything must be done in writing. (This is probably the best way since a lot of us with narcolepsy can't remember much of what was just said.)

This might seem paranoid to you, but take it from one who was screwed out of her long-term disability insurance... Do what you can to get what you earned!!!

~Chris in Iowa.

Hi Gregory,
This is Harvey. I found your letter quite interesting. My wife, Melanie, has Usher Syndrome causing deafblindness and I may have Narcolepsy. I go for sleep tests in about 11 days. It has been very difficult, Greg, to lead a normal life. My first marriage failed, I think mostly due to my former wife's inability to to cope with her own health problems. Maybe in part, also because of my problems. We had been married about 12 years before a separation and a total of 15 years before a divorce came. She was later to be diagnosed as having MS.
It has been much better with my present wife, Melanie. The sleepy times still exist and maybe even more so in this hot, dry Arizona weather. Melanie has become more supportive as she understands more about my condition and she fully believes that I have Narcolepsy. I seem to be going through a stagnant stage waiting to be tested and to get the test results. The sleeping disorder has greatly affected my life, but it has not prevented me from having a full life. And there are many out there ready to help you in this difficult time. I really would consider a good lawyer, because maybe you have not been treated fairly. With the support of your mate, I think it can go well for you. Your concerns are very real and I urge you to take the initiative in getting whatever help or support you need. I wish you the best.... HAB

hi sue,
I wanted to fill you in on my cataplexy episodes. I tend to know I am going
to go down immediately on two types of occassions. I have it at other times
but the prime factors for me are pain--the type of pain you have when you
hit your funny bone or stub your toe pretty good. i can tolerate pain at
the dentist say or a backache won't bring it on only the unexpected i would
have to call it. the other is anger when i will become pissed off for lack
of a better phrase and my temper just flares. normallly i'm very laid back
and have worked at that but every once in a while someone or something gets
it to burn and that sends me to a couch if not the floor before i even know
it. i really worked hard at identifyng other times it would come and
figured out ways to make those times easier or do necessary things a
different way. I always used to worry at the grocery store that i would
have an episode at the checkout stand in public by myself. It took some
time but eventually i had a system in place that made it tolerable. that's
not to say i didn't leave carts of food in line without me. After a few
changes in markets i worked it out pretty well. It's still an uncomfortable
time for me. my brother has it whenever he sees a policeman at the door. i
think that goes back to his teen years having parties while my parents were
away. anyway was wondering how your visit to sleep dr went? mikey

Hi Gregory. I'm so sorry to hear that you have been found unfit for duty. I have a son who has been in the Air Force for 13 yrs and I can't imagine how hard it would be on his family if he were to suddenly be diagnosed with N.
While I don't have the answers you are looking for, I feel someone on this list will be able to give you advise. Would you please tell us why you were given 0% disability? Seems to me you would certainly be given disability payments since you were diagnosed and then found unable to do the work assigned to you. Knowing that you have been treated in such a manner doesn't make me feel very good about the Army. It isn't as if you had just inlisted for the first time. You have given your life to serve. But you know all of this. Sorry for rambling.
I'm sure everyone else would like to know why you were not given disability. As a civilian, you can apply for Social Security Disability.
Marilyn
waiting for fall in the
Louisiana Swamps

Hi I'm new to this group and have read some of the posts. There are
alot of questions and different ways to deal with narcolepsy that are
posted. Though I read a lot of them I still have problems that no
body ever seems to have answers for.
Im a 30 yr old male in the US Army that was diagnosed with narcolepsy
in Nov. of 2002. I thought how bad could it be take a few pills and
everything would be fine. But was I ever wrong as time has gone by I
noticed something at times it seems to get better but then it gets
worse. Not only did i realize I have to deal with a disorder that
has taken part of my life away but my family suffers too. See I have
a wonderful wife who tries to support me though at the same time she
suffers from C.P. also there is my 18 mos. old daughter. They both
wait for me everyday to come home so I can play with my daughter and
talk to my wife but it never fails I sit down and within minutes I
have either fallen asleep or have gone into some sort of trance not
being able to move. Even if I can stay physically awake mentally im
not.
Ok enough of my home life I've been in the service now for 10 years
and through the years I've enjoyed my job for the most part. Now I
have been found unfit for duty which I understand. Barely being able
to stay awake and coherent I can't really defend or perform my duties.
Well they sent my medical records to medical review and become
official I'm unfit for duty. They also gave me 0% disability
rating. Ok so here I am trying to find a job to support my family,
trying to control my narcolepsy and wondering if we will be living on
the streets.
I realize alot of you think Im just whining and complaining. But
what I need more then anything else is to know that there is life
with narcolepsy.
Thank you
Gregory

Sue,
I am sorry about your daughter's accident. I am also sorry you are
having a rough time right now. When I read your post, I thought
about my own "numbness" in extremeties and any times that I have been
rendered "out" by C. My reaction - the intensity of my C varies
depending on: my physical state at the time (healthy? worn-down?),
the emotional intensity (small surge? overflow?), you get the idea.
It makes perfect sense to me that you would have to "sit a spell" in
the circumstance you described. Also, is it possible that your C has
worsened since the Bee Sting? I'll keep my fingers crossed for you
today. Good luck. Kerry

Hi all!
I am having a slight disagreement with my Dr.'s. I have a past history of
strokes so I know what they feel like. For the past year or so I have been
experiencing a strange sort of numbness in my extremities. Even severe pain
in my fingers and toes. My most worrisome experience was a few weeks ago,
my 8 year old daughter was involved in a significant accident with a young
neighbor. A 6 year old boy. His mom and I were giving a block party and we
had rented a Big water slide for the kids. Our kids were "testing" it before
the guests were due to arrive and they hit into each other. I was at my
house when this happened and they called my husband and I to get right over
there. When we arrived I figured a fat lip maybe and a bump on his head.
Well when I saw my daughters 2 front teeth imbedded in his skull I simply
froze. I looked in my daughters mouth and saw her perfect adult teeth were
cracked in 1./2 and I had to sit. I was frozen there. My Mom came and I
really could not talk. She said I was gray.
I was embarrassed by my reaction. I know the party guests must have thought
I was a horrible Mom. I have a background in medicine and normally will
respond with the correct action for the given situation. Even if it involve
a family member, I nursed my Dad during his Parkinson's until he passed. I
was extremely responsible when my (Same) daughter was stung by a bee and
almost died due to an allergic reaction we did not know she had. She was
swelled up beyond believe and gasping for air when we got her to the
hospital, but I didn't break down until she was release later than night. I
never "froze'. Was it shock, stroke or cataplexy?
I get this when the darn doorbell rings, my leg will give out. Or when my
daughter has a bad day at school and I get a note I lose feeling in an arm
or something like that. Not totally dead like when I had the strokes but
dead feeling? If that makes any sense?
Anyway my question is, is freezing like that cataplexy? If some of you
would not mind sharing some of your cataplexy experiences I would certainly
appreciate it. I see my Sleep Dr. in the AM and I will be bring my newest
MRI/MRA results proving I am not having strokes. But I would like to be
more informed on cataplexy.
Thanks so much!
Sue :)

i have heard it mentioned several times about someone named Emo and blue badges. whats all this about??
thanks
Mollie

No pumps, exercises or pills.
Made especially for lazy guys.
Sit around and make your member larger.
(seriously, check it out)
http://www.opejsn.com
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I'm curious too..who created this poll and for what purpose? I won't take part in a poll without knowing first, who created it and what will be done with the information. That's my two cents worth.
Marilyn