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Re: Narcolpsy..Is it a disability? Not according to Social Security


Posted by Nancy Valencia on May 11, 1999 at 04:26:29:

In Reply to: Re: Narcolpsy..Is it a disability? Not according to Social Security posted by Mary on May 08, 1999 at 16:37:37:

Hi Mike and all other fellow sleepy heads,

SINCE 1986 NARCOLEPSY HAS BEEN RECOGNIZED BY SOCIAL SECURITY ADMINISTRATION AS BEING DISABLING. (THE CASE WAS WINANS VS MARGARET HECKLER)
I have narcolepsy (diagnosis 1969 at age 23),I recently won my SSDI claim. I knew it would take a while, but I hung in there, and after the second turn down, I hired a "Social Security Claims Representative," a lawyer (sorry for cursing, a-hem). My claim was approved without having to appear before the administrative judge. I've sent a copy of it to Narcolepsy Network because NN has a file on persons with narcolepsy who receive SSDI claims to aid others. Narcolepsy Network is our national support and information organization. You need to request NARCOLEPSY: A DISABLED LAW OUTLINE (free) and DISORDERS IN THE COURT (cost:$1.00) These "papers were both written by R. Cloud, an attorney who has narcolepsy and serves as President of the Narcolepsy Network Board of Trustees. Do your self a favor and join NN. Dues are $25 per year if you have the dough (cough up!) and if you don't have the money, request a complimentary membership. With membership you get 1 free copy of a wonderful 28-page booklet Narcolepsy: A Guide to Understanding (non-member cost is $5) and a quarterly newsletter. Many other publications are available. Here's contact info: Narcolepsy Network, Inc. 277 Fairfield Ave., Fairfield, NJ 07004; phone: 973-276-0115;fax: 973-227-8224; e-mail: narnet@aol.com Mike, I think you should talk to your doctor pronto. Cylert is known to cause liver damage. Are you having blood tests periodically to check on liver function? Other medications, including the new Provigil, are available which will give you control over EDS. I believe you may have another problem. The tri-cyclic antidepressants used for cataplexy control CAUSE depression in most persons with narcolepsy. My cataplexy is moderate to severe. I take imiprimine only on an as needed basis which is rare. I always take it before I go swimming. Taking it on a daily basis makes me so dopey, confused, sleepy, and depressed that I would rather deal with cataplexy. I've learned some techniques for control. I suggest you consult with your doctor because you have clearly demonstrated in your posts and responses that you are sitting on the pity pot--that you are depressed. I believe your medication has a lot to do with your depression. There are other tri-cylics available and a new generation of meds that control C. Hopefully GHB will be approved soon by the FDA. GHB has very few side effects and doesn't cause depression. It is the best, most effective med for cataplexy control and has undergone fifteen years of experimental and clinical trials. You need support, information, and understanding. I invite you to communicate with me directly so that you can get off the pot! Get on with the second appeal; if your time has expired, ask for an extension. (You've contributed to SS for many years; now it is time to collect.) Mike, by this time next year, if not before, you could have your SS disability. If you don't get on with the next step, the time is going to pass anyway. You have nothing to lose and everything to gain. I am Nancy Valencia e-mail nanzzz@socket.net. With you sitting on the pot all the time, we might have to erect a "two holer!" :-)

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