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Can I Get Ssdi With Just Narcolepsy?


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#1 omllylisa

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Posted 19 March 2009 - 11:11 PM

I have difficulty reading, so please forgive me if this subject has already been addressed in previous threads. My mother and best girlfriend have been telling me that I should apply for disability because of the severity of my Narcolepsy. They see how it has hindered my life, especially with working and just doing everyday activities. I have avoided doing this because in the past I noticed that the only people that seemed to get Disability did not get it solely on the basis of Narcolepsy, usually everyone I talked to (or read posts of) all had something else in addition to Narcolepsy.

I want to know if there is anyone who has been able to receive Disability based solely on having Narcolepsy only.

I know that the process of applying is difficult and tedious (my mother tells me that they usually deny everyone the first time around, but you get back pay if accepted after appeals). I don't want to waste time, energy I don't have or money on a lawyer if there is no possiblity of getting it.

I don't have a long standing relationship with my doctor because I have seen several different doctors over the years, so no one doctor in particular is familiar with me other than what I tell them. I also don't know if any of these doctors are familiar or experienced with disability claims and I understand that it is important to have a doctor who is familiar with the process and has advocated for previous patients, someone with a good reputation with SSDI.

Any help with this would be great. If I know that at least one person has gotten it based on Narcolepsy alone, than at least I know there is some chance.

#2 Marcianna

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Posted 19 March 2009 - 11:45 PM

It was very very difficult for me to get my SS but in the end They just could not PROVE I was dangerous to work. so I ended up getting it for Bi polar instead. My best advice is if you have severe cataplexy GET IT ON TAPE. There is no denying video evidence, it is harder than it seems since you are usually aware some one is filming you. IT is extremely difficult to get disability in general and especially hard for those with N. But keep at it. you will be broke forever... always always always appeal. then if you get turned down in the end... start over again. Get a GREAT LAWYER. and what ever you do no matter how desperate you are...dont get a job. if you do it will "prove you can work" ....um...whatever....


you know... we need a good social worker on this site. If anyone has a friend who does that sorta thing ask them to join us. We could all use updated advice since the economy has gone down the tubes....

#3 loki

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Posted 22 March 2009 - 04:34 PM

I think they typically deny everyone a few times. You have to keep appealing to get it. It's a crazy system.

#4 dogdreams

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Posted 22 March 2009 - 05:11 PM

QUOTE (Marcianna @ Mar 19 2009, 09:45 PM) <{POST_SNAPBACK}>
you know... we need a good social worker on this site. If anyone has a friend who does that sorta thing ask them to join us. We could all use updated advice since the economy has gone down the tubes....

That, or a disability attorney, but I doubt there are any that would want to be giving out advice for free. Still, there was a really nice one that spoke at the NN conference in New York in the late 1990's. I think it was New York...my memory isn't always perfect. I did the audio editing for the tapes that year so I heard his talk quite a bit and it was very informative. I don't know if NN still has his contact info but I might have some old literature from the conference if they don't. I guess you guys could always order the audio of his talk from NN.

#5 SureSleepsalot

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Posted 03 September 2009 - 09:35 PM

hmmm. Killer advice cowgrl,(and Marcia) ...I am just about to start my process... and will definately be playing the Narcolepsy card- as well as the Brain injury card, I might throw in the ADD card and/or the Bi-polar card, But thats just if the Narcassism card and the Subtance abuse card don't workPosted Image ... Posted Image

Actually I'm joking, Im gonna discard the substance abuse card and the bi-polar card if at all possible... Are we playin stud? or Draw? Posted Image

I'm having a hard time explaining to my mother that going to the SS office applying for SSDI, then turning around and heading to the Temp Agency...Posted Image (the same day)Posted Image is not the best decision making...Posted Image This is the face I make when faced with this proposal...

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#6 elisdad44

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Posted 09 September 2009 - 05:02 PM

I have difficulty reading, so please forgive me if this subject has already been addressed in previous threads. My mother and best girlfriend have been telling me that I should apply for disability because of the severity of my Narcolepsy. They see how it has hindered my life, especially with working and just doing everyday activities. I have avoided doing this because in the past I noticed that the only people that seemed to get Disability did not get it solely on the basis of Narcolepsy, usually everyone I talked to (or read posts of) all had something else in addition to Narcolepsy.

I want to know if there is anyone who has been able to receive Disability based solely on having Narcolepsy only.

I know that the process of applying is difficult and tedious (my mother tells me that they usually deny everyone the first time around, but you get back pay if accepted after appeals). I don't want to waste time, energy I don't have or money on a lawyer if there is no possiblity of getting it.

I don't have a long standing relationship with my doctor because I have seen several different doctors over the years, so no one doctor in particular is familiar with me other than what I tell them. I also don't know if any of these doctors are familiar or experienced with disability claims and I understand that it is important to have a doctor who is familiar with the process and has advocated for previous patients, someone with a good reputation with SSDI.

Any help with this would be great. If I know that at least one person has gotten it based on Narcolepsy alone, than at least I know there is some chance.



#7 Ashley

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Posted 04 April 2010 - 09:30 AM

I've been denied twice and am now waiting for a date with a judge. I work 24 hours a week at a crappy job. I thought if you made under $900 a month it was okay to work. Is this not true? My attorney said it was fine but I'm not sure that he's very good.

#8 jenji

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Posted 04 April 2010 - 02:11 PM

I've been denied twice and am now waiting for a date with a judge. I work 24 hours a week at a crappy job. I thought if you made under $900 a month it was okay to work. Is this not true? My attorney said it was fine but I'm not sure that he's very good.



It can be a catch-22 to continue working whilst applying for or collecting SSD/SSDI. On one hand you may need to work to makes ends meet, even once you are granted benefits because the amount per month is laughable (or for those who cannot work at all, they must learn to live on income that is lower than the federal poverty levels), on the other hand being disabled makes working near impossible for most. The system needs an overhaul because there are many who are collecting and shouldn't be and many who should be collecting and are not.

A judge could look at your case and say that you're already working so you must not be that disabled so as to need to stop. If you're granted benefits and don't work for some time and decide to try to go back to work you can, but if you make anything over $900 (in most states) per month then you lose your SSDI benefits, while your SSD benefits will continue for some time. It's a very complicated process and you have to report (send your check stubs to SSD monthly) for every check you collect while working so that they can make adjustments to your benefits accordingly. Overall, disability assumes you cannot work, period. So working would be quite contradictory to a claim that you cannot work. Go to the federal ssd site. http://www.ssa.gov/disability/

jenji

#9 twoofus2sleepy

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Posted 06 April 2010 - 04:17 AM

It can be a catch-22 to continue working whilst applying for or collecting SSD/SSDI. On one hand you may need to work to makes ends meet, even once you are granted benefits because the amount per month is laughable (or for those who cannot work at all, they must learn to live on income that is lower than the federal poverty levels), on the other hand being disabled makes working near impossible for most. The system needs an overhaul because there are many who are collecting and shouldn't be and many who should be collecting and are not.

A judge could look at your case and say that you're already working so you must not be that disabled so as to need to stop. If you're granted benefits and don't work for some time and decide to try to go back to work you can, but if you make anything over $900 (in most states) per month then you lose your SSDI benefits, while your SSD benefits will continue for some time. It's a very complicated process and you have to report (send your check stubs to SSD monthly) for every check you collect while working so that they can make adjustments to your benefits accordingly. Overall, disability assumes you cannot work, period. So working would be quite contradictory to a claim that you cannot work. Go to the federal ssd site. http://www.ssa.gov/disability/

jenji



#10 twoofus2sleepy

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Posted 06 April 2010 - 04:35 AM

I got SSDI on my first attempt. Very lucky!! They gave it to me for dementia and I can't remember why? LOL!! It was based on my N symptoms and it really affects my memory. THe S.S. dr gave me many memory tests that I guess I failed . His report probably was the clencher. I have heard the older you are the better I have yet to find a med that works. Xyrem was not around but I can't take that either. I sleepwalk the second time I tried it I got up and fell on my exercise machine and fractured my back.


Working while disabled I understand a little differently than the above post. I know people who work in addition to the SSI they receive. I just started doing a few jobs where I can accept or refuse and it is 4 hour day and I might do it 11 times in a year. It pays very well and it qualifies me for earned income since I have a dependant.


Good Luck!!

#11 sleepyavon

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Posted 02 June 2010 - 11:49 PM

I got SSDI on my first attempt. Very lucky!! They gave it to me for dementia and I can't remember why? LOL!! It was based on my N symptoms and it really affects my memory. THe S.S. dr gave me many memory tests that I guess I failed . His report probably was the clencher. I have heard the older you are the better I have yet to find a med that works. Xyrem was not around but I can't take that either. I sleepwalk the second time I tried it I got up and fell on my exercise machine and fractured my back.


Working while disabled I understand a little differently than the above post. I know people who work in addition to the SSI they receive. I just started doing a few jobs where I can accept or refuse and it is 4 hour day and I might do it 11 times in a year. It pays very well and it qualifies me for earned income since I have a dependant.


Good Luck!!


I just got SSI disability for the second time in my life. It is a long and tough struggle, and much needs reform to help us disableds live with dignity. I have many health problems, but I was just approved because of my severe narcolepsy. I have an excellent physician, Dr. Phillip Becker and his PA Patty who has gone above and beyond for me time and time again; filling out residual functioning forms, food stamp disability forms, and several RX assistance manufacturer applications. My signature includes a link to my petition, and the Video is of me having a severe cataplexy induced state of Sleep Paralysis.

#12 Sleepy Sleepy

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Posted 22 June 2010 - 07:37 PM

I just got SSI disability for the second time in my life. It is a long and tough struggle, and much needs reform to help us disableds live with dignity. I have many health problems, but I was just approved because of my severe narcolepsy. I have an excellent physician, Dr. Phillip Becker and his PA Patty who has gone above and beyond for me time and time again; filling out residual functioning forms, food stamp disability forms, and several RX assistance manufacturer applications. My signature includes a link to my petition, and the Video is of me having a severe cataplexy induced state of Sleep Paralysis.



I was denied for SSI the first two times that I applied. On the second attempt, it went to a judge called an ALJ judge. I went and got a disability attorney and was denied again.

What I did was refile with all new medical information, and my doctor was kind enough to write a statement saying that he deemed me medically disabled from Narcolepsy. I took that letter and had the Social Security office stamp it and put it in their file.

From there, Social Security sent me to their own doctors. I had to take an IQ and memory test. I failed the memory test. Was also sent for a complete psychiatric evaluation to their doctors, and their neurologist had the same findings of me being narcoleptic. Some of the tests were physical tests.

To my amazement, three months later I was approved. I didn't have enough work credits to get the larger SSI check that some people get. I got a few months of back pay from the time I had refiled. I did not use an attorney the third time.

There is a website called, "the disability expert." If you Google it, I swear it is the most helpful website when it comes to filing for SSI disability. I got a wealth of information from the site when I refiled. You just have to read through it thoroughly.

Good luck!