8 replies to this topic

[tweety836]

I AM GOING THROUGH REVIEW RIGHT NOW FOR THE FIRST TIME SINCE I WAS AWARDED SOCIAL SECURITY! I STARTED ON IT IN 1996. SO IT'S BEEN ALMOST 8 YEARS AND THEY ARE STILL REVIEWING. PROBLEM IS THEY DON'T EVEN KNOW WHAT IT IS! THEY SENT ME TO A PSYC FOR EVALUATION FOR MEMORY LOSS AND THE DOC DIDN'T EVEN KNOW MUCH ABOUT NARCOLEPSY, I EXPLAINED ALOT OF IT AND HE ASED WHY THEY EVEN SENT ME TO HIM. LOL! SO WE'LL SEE WHAT HAPPENS NEXT. TALK TO YOU SOON, LINDA

[Wink]

I AM GOING THROUGH REVIEW RIGHT NOW FOR THE FIRST TIME SINCE I WAS AWARDED SOCIAL SECURITY! I STARTED ON IT IN 1996. SO IT'S BEEN ALMOST 8 YEARS AND THEY ARE STILL REVIEWING. PROBLEM IS THEY DON'T EVEN KNOW WHAT IT IS! THEY SENT ME TO A PSYC FOR EVALUATION FOR MEMORY LOSS AND THE DOC DIDN'T EVEN KNOW MUCH ABOUT NARCOLEPSY, I EXPLAINED ALOT OF IT AND HE ASED WHY THEY EVEN SENT ME TO HIM. LOL! SO WE'LL SEE WHAT HAPPENS NEXT. TALK TO YOU SOON, LINDA

So, Linda, how did that turn out?
I am currently waiting for my appeal to be heard for disability--mininum wait time one year. I recently heard that if your financial situation really deteriorates while you're waiting, your lawyer can request--and obtain--a sooner hearing. Anybody ever hear of this? There was a local case recently of a person with MS contacting their Representative in Congress to request an immediate hearing after being denied. He, of course, was awarded his money. Why do I feel that, with narcolepsy, my situation isn't as desperate as his was?

[sleeplzzzz]

I aboslutely hate what we all seem to be experiencing when it comes to understanding of this illness, either by family, friends, or officials. I'm forty two and last year was diagnosed with Narcolepsy w/Catapaplexy and Obstructive Sleep Apnea. My symptoms took me through thousands of dollars ion medical testing, from possible muscle deterioation to heart problems, and the bottom line was not even close to what they were looking for. I went on disability, filed bankruptsy, and could and still can barely afford to live. The only fortunate thing for me; my physician also suffers from the same diseases, which helps tremendously when trying to get benefits. My first application for SS was denied, as many have stated..... we're perfectly fine, give us some uppers, we'll be ok... How I wish that were true. However withing 6 months of my 1st denial, I was approved with re-evals every three years, nothing close to what I'm use to living on, but better than nothing at all. I think the problem is ignorance, Narcolepsy is listed at NORD, Nat'l Org. of Rare Diseases. I researched alot, printed out every story I could find relating to the illness as well as news stories on people falling asleep at the wheel. My employer had hired the attorney, but even they had no clue what they were fighting for, so, I proceeded to help them with barrels of additional info, rather than just the description pulled from the dictionary. I feel for all of us and wish everyone that shares in this problem to pull what you can from all literature available and fight for what is rightly yours. We worked for the benefits, we deserve to collect them in our time of need... Good Luck and God Bless all of US...


Sleepyzzzz

[ladonabelle]

Hi There,

I'm new to this website. Did you get awarded SS for your Narcolepsy, and how long did it take? I've been trying for six months now. On May 29th I totaled my car, and didn't even remember leaving my house. I can't drive for a month, or work. Any tips on how to get it faster?

Thanks
Ladonabelle

I AM GOING THROUGH REVIEW RIGHT NOW FOR THE FIRST TIME SINCE I WAS AWARDED SOCIAL SECURITY! I STARTED ON IT IN 1996. SO IT'S BEEN ALMOST 8 YEARS AND THEY ARE STILL REVIEWING. PROBLEM IS THEY DON'T EVEN KNOW WHAT IT IS! THEY SENT ME TO A PSYC FOR EVALUATION FOR MEMORY LOSS AND THE DOC DIDN'T EVEN KNOW MUCH ABOUT NARCOLEPSY, I EXPLAINED ALOT OF IT AND HE ASED WHY THEY EVEN SENT ME TO HIM. LOL! SO WE'LL SEE WHAT HAPPENS NEXT. TALK TO YOU SOON, LINDA

[tweety836]

<!--quoteo(post=1623:date=Feb 6 2008, 11:57 PM:name=tweety836)--><div class='quotetop'>QUOTE (tweety836 @ Feb 6 2008, 11:57 PM) <a href="index.php?act=findpost&pid=1623"><{POST_SNAPBACK}></a></div><div class='quotemain'><!--quotec-->I AM GOING THROUGH REVIEW RIGHT NOW FOR THE FIRST TIME SINCE I WAS AWARDED SOCIAL SECURITY! I STARTED ON IT IN 1996. SO IT'S BEEN ALMOST 8 YEARS AND THEY ARE STILL REVIEWING. PROBLEM IS THEY DON'T EVEN KNOW WHAT IT IS! THEY SENT ME TO A PSYC FOR EVALUATION FOR MEMORY LOSS AND THE DOC DIDN'T EVEN KNOW MUCH ABOUT NARCOLEPSY, I EXPLAINED ALOT OF IT AND HE ASED WHY THEY EVEN SENT ME TO HIM. LOL! SO WE'LL SEE WHAT HAPPENS NEXT. TALK TO YOU SOON, LINDA<!--QuoteEnd--></div><!--QuoteEEnd-->

So, Linda, how did that turn out?
I am currently waiting for my appeal to be heard for disability--mininum wait time one year. I recently heard that if your financial situation really deteriorates while you're waiting, your lawyer can request--and obtain--a sooner hearing. Anybody ever hear of this? There was a local case recently of a person with MS contacting their Representative in Congress to request an immediate hearing after being denied. He, of course, was awarded his money. Why do I feel that, with narcolepsy, my situation isn't as desperate as his was?

[tweety836]

My gosh I have been away from here forever. So sorry! The social security review board called and cancelled review after all that! Michigan cut funding for reviews so they dropped some and I was one of them...go figure! So I guess they are done with me for another 8 to 10 years. I waS APPROVED BACK IN 1996 AFTER ONLY 3 WEEKS! Back then unknown to me they just put narcoleptics under the epilepsy catagory. Take care, Linda

[sgreenwalt]

I was expecting a review at the 3 year mark (November 2009). Two months later, I have heard nothing from the SSA.

Should I be expecting a review? Do I need to be concerned about this?

Thanks

[Sleepy Diver]

There is no set time for a review to take place. Often times, the ALJ who decided your claim favorably will insert language in his/her decision regarding a review. However, there doesn't appear to be any particular criteria or time frames for reviews. It is correct that the older a person gets, the less likely a review is going to occur. This is in part because there are age brackets (grid rules) which take into account a person's age and education. The older the person and the lower their education, the less that must be proved to obtain your SSI/DIB.