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DMarnien

at appeal hearing and judge requested you get a pysch evaluation??

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So has anyone had a judge that request that you get a pysch evaluation for your narcolepsy??  

 

I was diagnosed w Narcolepsy w cataplexy back in 2010, after a year of doing various tests to figure out what was wrong with me.  I was working full time at an Ivy League University, making almost 6 figures, i worked there almost 12 years total.  Finally work just became too much, and my sleep dr has been after me for years to just stop working because I can not continue to live my life like I was.  People were beginning to talk and notice that i couldnt stay awake, in meetings people would nod and point at me, even go to my boss and ask if i was ok, even my actual work was really becoming clear to me because I don't recall writing this report or doing that calculation, but somehow it had my handwriting and sign off all over it. So i left my job and applied back in 2014 for SSI.  I had an attorney as well, and was denied initially, then denied again....then i had a two year wait to meet and plead my case to a judge, which was August 10th, 2016....the judge said in all of his 22 years on the bench, he never had a case like mine, and he said he had to automatically assume that everyone pleading their case was lying to him. I told the judge that my earning potential is much greater than what SSI was going to give me each month, would i really want to give up my career, putting myself thru college for 8 years, to just stay home each day and receive a third of my salary??  the judge said to get a letter from my employer stating how good of an employee I was and when they began to notice my sleeping at work, so I got the letter back to him within a week, so this  was  still August 2016....well right after Halloween, I get a letter from SSI stating that the judge sent my file to another doctor to review, and the name of the dr.  so of course i look this doctor up, and you would HOPE that the judge would send this to another sleep specialist or someone in that particular field or study, but nope.  This doctor is an Oncologist, a doctor that studies tumors, cancer tumors.  Ok so how is this doctor going to be able to read my sleep study???  so this doctor recommends that 1. i shouldnt be driiving, which my doctor already included in my paperwork that I do not drive anywhere more than a half an hour, and my dr believes that i would not get behind the wheel if i didn't feel right, cause I can usually tell when my cataplexy is going to happen.  and the 2. suggestion is that i go and get a pysch evaluation.....ok so this is where i am a bit puzzled...so i took an online pysch evaluation and all it said is that i am mildly depressed, which again is in my file and of course I am a bit depressed because I worked my butt off in college and had an awesome job, making great money, when after the birth of my first cbild i could not stay awake at all, and was diagnosed with this illness, which i never heard of before in my life.   Apparently this dr stated that people with Narcolepsy usually have other forms of mental illness, which if i had anything else other than a mild case of depression, i dont know if i would have been able to hold a job, or even how i would be, but i dont understand why they are requesting a pysch evaluation??  Narcolepsy is not a mental illness or maybe they think i am for falling asleep throughout the day....so if the tests says i am usually really tired and depressed, does that mean that i am approved, or is this something that he just wants to be included in my file???  at my hearing, he really seemed like as long as I got him the letter from my employer that he would approve me, esp because he made statements saying well maybe when you have medicare, you will be able to get all of your medicine plus the fact that he was laughing and joking around......just really dont know how some people can go this long without knowing whats going to happen, this is a definite financial hardship on me, my husband, my   kids, my pension is gone now cause of this long wait, my credit is ruinned because i havent been able to pay some of my own bills, we are basically living on credit cards because my husband uses all his paycheck to pay the house, cars, and most of our bills.....and our savings has been long gone....anyone that has thoughts on this to put my mind at ease, or help me cause this whole issue of not knowing whats going to happen, it consumes and drains you!!!!         





















  












                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                
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                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                        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Sorry you're having a bad time. I'm an attorney but don't do disability. Unfortunately our legal system is a total disaster. The judge likely has no comprehension of N's pathology. People with N are often initially misdiagnosed with depression. Frankly many people still believe it's a physiological disorder. Certainly depression can occur in tandem but that's also true in Parkinson's disease (50%) and other diseases that alter the level of neurotransmitters in the brain. 

Depression is also a basis for disability and I believe is actually the most common. Our legal system assumes people are defrauding the system, despite that it rarely occurs. If our legal system is the best in the world, the world is screwed. 

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Thanks Jasonm...i know my attorney actual opened my eyes to the depression part, which im sure is obvious and common for people w N.  The judge was no spring chicken but you would hope or think that in this day in age, and as part of his profession,that he could do a little research..  I still find it hard to believe that people are so unsympathetic to individuals with N.  I can only think that maybe he wanted another form of documented evidence for the depression portion for my SSI case...anyone can take medication for it, but i guess to have it documented by a psych dr puts it into another category.  Really just hope that this will be enough to finally get this approved!!!!  I will definitely follow up on what happens with this case.

 

Jasonm, you should really consider going into the disability attorney practice?!?!?!?! Not sure how you are able to keep up all of your work duties as an attorney w having N, but I def give u tons of credit!!!!  Thats the whole reason I am depressed is because I miss working so damn much!!!

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Our society is not going to be able to advance much more until we begin to embrace more technocracy. Judges, members of Congress, the POTUS, none of them have the slightest clue of what they are talking about when they make decisions on technical/medical issues. Sorry to hear you've had such a *BEEP*ty time of it.

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@DMarnien sorry for the slow reply. I know what you mean. Being unproductive is a trigger for feeling bad for me. Believe me, it's a challenge. I'm milder on the symptomatic spectrum so that helps. I also work for myself so if I'm having a rough patch, I'll take less clients. Finding something you can do on your own schedule is extraordinarily liberating. There's no way I'd be able to do 60hrs a week. 

Finding the right treatment and doctor is also key. You've got to be willing to experiment to find out what works best for you. Getting into shape is also absolutely critical for long term success. I've gone from great shape to out of shape and back again. Being in shape unmedicated was better than out of shape on high dose stimulants. 

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The following is taken from the article "Getting Disability Benefits for Narcolepsy" which can be found here: http://www.nolo.com/legal-encyclopedia/getting-disability-benefits-narcolepsy.html# 

Can I Get Disability for My Narcolepsy?

Narcolepsy is not a condition that can automatically qualify for benefits if it matches a Social Security impairment listing—there is no listing for narcolepsy. But it's possible your symptoms could be similar enough to those caused by frequent dyscognitive seizures, in which case your condition might be considered equivalent to epilepsy, which does have a listing (listing 11.02).

To qualify for benefits, you must be able to prove that:

  • You have at least one episode of narcolepsy per week;
  • Your condition must persist in spite of at least three months of treatment; and
  • Your episodes have a significant effect on your ability to perform day-to-day activities.

If you don't try to "equal" the epilepsy listing, the Social Security Administration (SSA) will look to whether you are able to perform your past work despite your narcolepsy. If the SSA believes you should be able to perform your past work, your claim will be denied. But if the SSA believes that your narcolepsy prevents you from doing your past work (say you used to operate heavy machinery), the SSA will then determine whether there is other work in the U.S. that you're able to perform. To decide this, the SSA will look at your age, education, past work experience, and the work limitations associated with your narcolepsy.

To prove that your narcolepsy causes work limitations, you should provide the SSA with a residual functional capacity (RFC) assessment from your treating physician. An RFC is a detailed report on how your narcolepsy affects your ability to perform work-related activities. A well written and well supported RFC is necessary to win your claim for disability based on narcolepsy. Even though the SSA will accept medial evidence from any licensed physicians who treats you, it will give more weight to a doctor who specializes in narcolepsy. Therefore, you should ask your neurologist to fill out an RFC form. (Learn more about the role that RFCs play in the medical eligibility determination.)

What Should My RFC for Narcolepsy Say?

Your RFC must explain in detail how your narcolepsy prevents you from working. For example, you may need to take frequent and unscheduled breaks throughout the day because of your narcolepsy. And because the symptoms of narcolepsy may be mitigated by scheduled naps, your employer would need to provide you with a place to sleep at regularly scheduled intervals. Most employers are unwilling to provide this type of accommodation. Also, the SSA will approve disability claims where an RFC establishes that the applicant's impairment would result in a 20% decrease in productivity; therefore, because the frequent need for naps and unscheduled breaks would severely impact your productivity, it is unlikely that you could engage in full time work.

Your neurologist should also explain in your RFC how your narcolepsy affects your ability to walk, sit, stand, push, pull, lift, and carry. For example, if you suffer from cataplexy as a result of your narcolepsy, it may be particular dangerous for you to engage in any strenuous activity. This would further limit your ability to perform many jobs. Also, because narcolepsy causes extreme drowsiness, you likely would be prevented from any jobs that required you to climb ladders, drive heavy machinery, or engage in any type of work where safety is at issue.

If you take medication to treat your narcolepsy, you should document any side effects with your doctor and to the SSA. Your doctor should then report on your RFC how your narcolepsy medication impacts your ability to focus, complete tasks, and follow directions.

If the SSA decides that based on your age, education, past work experience and the limitations outlined in your RFC that there is no work you can do, your claim should be approved.

What Kind of Medical Evidence Do I Need?

An RFC is only as good as the medical evidence that supports it. Therefore, it is important that you or your doctor provide the SSA with as much medical evidence as possible to support your diagnosis of, treatment for, and symptoms of narcolepsy. You should provide the SSA with the results of any sleep studies, EEGs, and genetic tests performed by your treating physicians. Also, you should provide copies of any sleep journals that you have kept to document your sleep patterns. Medication lists should be provided along with a description of any side effects you experience. You should also request copies of your doctor's notes from your appointments for treatment and your diagnosis of your narcolepsy. It will speed up your claim if you can submit these to the SSA yourself, along with an RFC form from your doctor.

 

 

 

FEATURED LISTINGS FRO

 

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ok so i have an update on my case.  so the judge called us back to hold another hearing meeting with me, this was March 9th.  If i wasn't available on that date, then I would have to wait until May because he was going out on vacation, so obviously i took this under a week of being notified by my attorney.  So at first the judge said he didnt feel great about my case because of the pysch  evaluation said "backfired on me."  Which only shown that I am depressed, but this dr had no idea that I had narcolepsy, which I guess somehow he should have known this prior to our meeting.  So then he goes on about how my student loans were approved for disability, which he seemed kind of surprised about that.  Then he asked the other court officer who is there to determine your work experience level, based on your education, and work history. And the lady told him that I was a very high level 8, possibly a level 9, very skilled worked, and based on what my dr wrote up, that I am a safety issue, so therefore I could not go back to my previous line of work or anything near that skill level of work.  Which then he asked about my sleepwalking because he didnt see anything recently from my dr that indicated that I was still sleepwalking.   I told him that my sleepwalking has remained constant, actually has gotten much worse over the years.  I told him that I sleepwalk 4 out of 7 nights, and my attorney told him that my husband was there to testify to this, but the judge said that wasn't necessary since he read my husbands letter.   Again, he asked me if I had anything to state on behalf of my case, which I just told him again about how I was making much more, and that my earning potential, is so much greater than the monthly amount that they are going to give me each month.  And how I didn't go and put myself and worked 8 years to get my college degree to sit at home all day, this was never my plan.  How I was working at a high level at an Ivy League University, earned awards and grants to continue my studies, why would I leave a job that I loved and worked so hard for, to stay home and sleep all day.  I really wish I could still work and if there was anyway that I could work, I would gladly give them their SSI money back because that job would definitely be paying me more a month.  So he sat back and said ok, now I agree with you and am leaning towards approving you.  Earlier that day, the judge asked me if i have a sleep log, which i told him I just started something over the past summer because I was having night sweats, and that my sleep dr recommended me to keep track of it  to see if there was a pattern, and to schedule an appt w my ob/gyn, which i did and he tested me to see if i was going thru premenapasual.  But that wasn't the reason.  So at the end he asked me for copies of my sleep log, and said on record that he is going to make me jump thru hoops before he approves me, and said that he knows he is being harder on me than he needs to be, and that it is just because of my age....so #1, he is now descriminating against me because of my age, and that it is also on record of him saying this......so my attorney said she thinks i am in good shape, and if by chance he denies me, then I would def be able to appeal this....so this still continues....

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As an attorney, I wish I could say your case is unique. The legal process is slow, bias, and terrible. Judge's often get appointments for political reasons rather than ability. I never imagined the system was so flawed until I experienced it first hand. I wish I'd never gotten involved in the career. Very few people are on disability by choice. A few jackasses that abuse the system ruin it for everyone. 

Sorry you're having to jump through hoops. Good luck!

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