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Never Disability For Narcolepsy?


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#1 SleepyWalker

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Posted 27 March 2011 - 01:19 PM

Hi all. I am new to both Narcolepsy Network and my narcolepsy diagnosis. My MD tells me that narcolepsy never qualifies for disability because treatment is successful. Is this true? I believe I may be having serious side effects to my meds, but my MD will not even consider this.

#2 merrymom1013

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Posted 27 March 2011 - 02:02 PM

There is no condition that is always approved or not approved for disability. It is how the condition impacts your ability to work & function. Check out the NN website- I think there may be publications you can order about narcolepsy & disability.
Having said that, if your own doctor isn't seeing you as disabled, your chances of getting disability probably aren't good. You also may want to read through some old posts here on the topic.

#3 utmost

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Posted 27 March 2011 - 03:53 PM

I am applying for the 1st time; my doctor says it depend on co-existng factors, age, length and types of treatment tryed. i am still worried. wish I could find a more definitive answer or better guidance. Most people say get a lawyer, but that takes a lot of the money upfront and I need every cent to get out of debt, from cutting back for so long at work, trying to "deal with it".

#4 SleepyWalker

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Posted 27 March 2011 - 08:25 PM

So in some situations Narcolepsy continues to qualify for disability? After speaking with my MD, I had the impression that there is never any case for disability due to Narcolepsy. Knowing how limiting this illness can be, and reading peoples personal struggles with narcolepsy makes me doubt that it's that cut and dry.

#5 SleepyWalker

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Posted 27 March 2011 - 08:33 PM

My doc was not speaking specifically to my situation, but more in general. In fact, this is the first time I have actually seen this doc since my N diagnosis, and she did not seem to have a good working knowledge of my symptoms and treatment effectiveness when she made that comment. In fact, I was not expressing a desire to pursue disability, just that I was currently on short term disability due to some severe symptoms that I thought could well be related to the meds for narcolepsy. Do you think it's rare that narcolepsy is unable to be successfully treated?

#6 chasing_sleep

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Posted 15 April 2011 - 01:42 PM

[quote name='SleepyWalker' date='27 March 2011 - 09:33 PM' timestamp='1301276034' post='15920']
My doc was not speaking specifically to my situation, but more in general. In fact, this is the first time I have actually seen this doc since my N diagnosis, and she did not seem to have a good working knowledge of my symptoms and treatment effectiveness when she made that comment. In fact, I was not expressing a desire to pursue disability, just that I was currently on short term disability due to some severe symptoms that I thought could well be related to the meds for narcolepsy. Do you think it's rare that narcolepsy is unable to be successfully treated?
[/


i think its on a case by case basis on how successful narcolepsy can be treated. its depends on how the individual can tolerate the meds that have been prescribed for them. for instance i can't tolerate ritalin at all, but others have great success with it. i would recommend that you have a dr that is very familiar with sleep disorders. i am not saying that your dr is or isn't. i know when i first started this journey if i would have kept with my first dr i would have gone nuts.

#7 sleepymomof3

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Posted 02 May 2011 - 01:28 PM

I applied for SSDI in Nov 2008. I just received notice that I have been approved. I had to go all the way to the hearing before the judge but I am proof that narcolepsy can qualify.

#8 wantingcoffee

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Posted 01 August 2011 - 02:30 PM

I am applying for the 1st time; my doctor says it depend on co-existng factors, age, length and types of treatment tryed. i am still worried. wish I could find a more definitive answer or better guidance. Most people say get a lawyer, but that takes a lot of the money upfront and I need every cent to get out of debt, from cutting back for so long at work, trying to "deal with it".

i am currently going through this now and here there are many lawers that will take the case basied on if you win then they take the cost out of the winning...try looking into that

#9 Phi

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Posted 22 August 2011 - 08:21 PM

I am on disability. I was approved before my narcolepsy diagnosis, due to eds and muscle weakness and depression. No depression anymore (since diagnosis!) but still qualify for rsdi with narcolepsy. It's not enough money to live off (single mom two kids!), but it supplements what I can make with the work I'm able to do.
Don't understand how n (especially with cataplexy) could NOT be considered a disability! I guess it's case by case, but I used to try to put in full time work, with varied success. Now that my cataplexy is worse, cannot work much. Have an associates degree, but stopped a few credits short of a bachelor's ( I have 96 credits) because I could not stay alert/awake.

#10 narcatfl

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Posted 26 August 2011 - 11:21 PM

I had a lawyer with no up front costs. My lawyer was there for me at the hearing and I'm so glad, because my cataplexy was by no means under control at the time. I was so nervous and it took everything to stay as emotionless and alert as I could. I had applied for disability for PTSD, and while I was waiting, the Dr diagnosed me with N/C. The phone would ring and I would be laid out on the table because I was excited of who it might be! I was able to get patience assistance for Xyrem before getting Medicare.

#11 kjordan93

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Posted 04 September 2011 - 07:47 PM

Hi all. I am new to both Narcolepsy Network and my narcolepsy diagnosis. My MD tells me that narcolepsy never qualifies for disability because treatment is successful. Is this true? I believe I may be having serious side effects to my meds, but my MD will not even consider this.



That is not true. I was just granted disability for my Narcolepsy. You will be denied a couple of times but you just have to keep trying until you get it.

#12 jayjay66

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Posted 26 September 2011 - 05:13 PM

Hi all. I am new to both Narcolepsy Network and my narcolepsy diagnosis. My MD tells me that narcolepsy never qualifies for disability because treatment is successful. Is this true? I believe I may be having serious side effects to my meds, but my MD will not even consider this.


This is not correct at all. I applied for SSD and w/in 3 months I was approved. I think the important thing to remember is to provide the SSA with all of your medical records. When filling out the forms, go the extra mile and be very detailed how Narcolepsy effects every aspect of your life. I have been on SSD for 10 years now and just recieved notification that I am up for review to see if I am still disabled under their terms. I was naturally a bit worried. Thinking that maybe this is a way the government is going to save money......Then I realized that this is routine for the SSA. I have spent 3 days completing all their forms. I will send them off tomorrow and just wait to see what the out come is this time.

I don't think that most people understand just how debilitating Narcolepsy is. I have had 3 jobs since my medical seperation from the military. They were minimum wage, low skilled jobs. But I have been so depressed staying home and not being involved in life that I simply needed to get out of the house. The first job I had was working customer service at a dry cleaning shop. I was hired part time and only to work mornings. Well from the first day they scheduled me full time and I tried to make it work. I then spoke up and said I was hired on part time and they reduced my hours. But I still was driving to work illegally (license taken away from the public safety administration in 1996) and not being able to take my naps when needed. I began abusing my meds and taking more hoping that would help me be proficiant at work. After my shift I would go and nap in my car. Drive home, less then 5 miles. The entire time of course looking in the rear view mirror for some flashing lights and stressing myself out. Then I would go home and be completely useless for the rest of the day. Basically the same thing happened with all 3 jobs. And the end result was my emotional well being was so disrupted due to me abusing my meds. At home I had no interaction with my children, I would sleep, work then sleep. I pushed it with my 3rd job to the point that I eneded up getting so mentally messed up that I got into an argument with an co worker and ended up getting fired. I loved that job but I wanted to learn more and do more. I wanted to be the best. But I couldn't do that 4 hours a day. So when they started training me on other tasks I greatly accepted...upping my dosage. I wish there was someway I could work. My daughter has graduated college now and lives in a different state. My son joined the Marine Corps. I am left alone. No family, no friends....I am over weight, not because I eat too much, but because I do NOTHING all day long. I have became so depressed that I just sleep all day long now. I know if I had a job that would accomodate my condition I would not be depressed and sleeping as much. I would meet people and maybe start to have a social life. How do you people that work or go to school do so successfully? Gosh if I could become employed I would be so happy not to have to collect SSD. So basically through all of this rant I just want to say to some people fighting for SSD....be careful of what you ask for, you just may get it.

#13 keean

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Posted 28 September 2011 - 01:37 PM

Wow I could have written that post myself. I too have been on SSDI for a long time and I would rather work. I never knew before sleep disorder Dx how people manage everything they do and I can't even keep up with the most basic of things. I quit a job I had a month or so ago, after only two weeks. I was only ever scheduled to work 4 hours a day but I couldn't even make it that long without sleep attacks. I drank tons of espresso to little avail.

I have tried so many times to work over the years, all failures. SSDI doesn't give you much, if not for one family member supporting me I'd still be homeless, maybe dead by now. It's all so depressing because when I feel awake and alert I feel like I'm not being productive enough and I'm such a lazy jerk. But then I have yet another sleep attack and I'm reminded why. I want to be productive and social but narcolepsy (and depression it causes) keep screwing that up for me.

I have had some success with school by switching to independent study, but it's still taking me a very long while, nowhere near the level other people manage. I also volunteer with non profits here every once in a while. You might look into doing that. Some of them are too intense, but I did find some that are much more laid back and accommodating. It helps me with depression to get out and do something even if it's just a couple hours every now and then.

#14 narcats

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Posted 30 September 2011 - 12:15 AM

son filed in 2009 ..we go before the judge oct 27 2011..keeping fingers crossed.....

#15 narcats

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Posted 28 October 2011 - 04:33 AM

son applied in 2009 we had our court date oct 27 2011 now we wait..the ss books do not have a listing for Narcolepsy but there are others collecting for this problem..no matter how educated someone is they think they know everything...

#16 sleepless sleeper

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Posted 28 October 2011 - 11:54 PM

your MD is flat out wrong. considering that merrymom is accurate, it makes me wonder why your dr said that to you.

#17 Lis

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Posted 14 January 2012 - 10:49 PM

OMG! That is so NOT true!!!!! Get out of there fast and make an appointment with a new sleep specialist, preferrably one VERY experienced in treating narcolepsy. As for the meds-- take ALL side effects seriously! I had the SAME problem and it ended up hurting me in the end and delaying appropriate treatment for over 5 years! Oh please, hun, get a good sleep doctor. The information your current one gave you is absolutely FALSE!!!

Hi all. I am new to both Narcolepsy Network and my narcolepsy diagnosis. My MD tells me that narcolepsy never qualifies for disability because treatment is successful. Is this true? I believe I may be having serious side effects to my meds, but my MD will not even consider this.



#18 SleepyWalker

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Posted 14 January 2012 - 11:47 PM

OMG! That is so NOT true!!!!! Get out of there fast and make an appointment with a new sleep specialist, preferrably one VERY experienced in treating narcolepsy. As for the meds-- take ALL side effects seriously! I had the SAME problem and it ended up hurting me in the end and delaying appropriate treatment for over 5 years! Oh please, hun, get a good sleep doctor. The information your current one gave you is absolutely FALSE!!!


Thank you so much! I especially appreciate how heartfelt your response was. The good news is I have changed doctors and am much more satisfied. Even more good news is that for the most part, my treatment is successful, and I continue to work. I do fewer hours and have a job that is flexible as well as allow myself what I need to cope when some days are worse than others. I have not had to seek disability so far, but after reading all of your great responses, I have comfort knowing there are options if that time comes.

#19 Lis

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Posted 15 January 2012 - 11:01 PM

Thank you so much! I especially appreciate how heartfelt your response was. The good news is I have changed doctors and am much more satisfied. Even more good news is that for the most part, my treatment is successful, and I continue to work. I do fewer hours and have a job that is flexible as well as allow myself what I need to cope when some days are worse than others. I have not had to seek disability so far, but after reading all of your great responses, I have comfort knowing there are options if that time comes.

aw, thank you. I'm so glad you are satisfied with your current doctor and treatment. Good for you for hanging in there while you still can. I hung in there too until there was nothing left to hang on to. Was a horrible adjustment, but it does get better. :)

#20 ayesart

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Posted 08 February 2012 - 08:42 PM

Hi all. I am new to both Narcolepsy Network and my narcolepsy diagnosis. My MD tells me that narcolepsy never qualifies for disability because treatment is successful. Is this true? I believe I may be having serious side effects to my meds, but my MD will not even consider this.


Narcolepsy in combination with cataplexy does qualify along with other symptoms. Insomnia, sleep walking, short term memory loss - severe. The memory loss is a big factor along with Narcolepsy. If you cannot drive to work because your sy,ptoms are severe, how can you keep a job? I think you should talk directly with Social Security about your disability.
1: Make sure that you bring along all your medical records.
2: Make sure to bring along list of medications that you are taking.
3: Make sure you bring along your list of doctors that you have been seeing from day one of your diagnosis.

A lot of persons go to the Social Security office without any records what so ever. They are treated like a homeless person who has their hand out. They never get anything from disability.

Take note: It will take two years to get medicare part A and B.

Good luck.