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Thread: I need help

  1. #1

    I need help

    I am suffering with a Chiari Malformation, and other related anomalies such as sleep apnea. I believe I also have syringomyelia because my legs and my arms and the pain and the loss of sensation and temperature. I have also been suffering from sleep paralysis and possibly narcolepsy. I don't know where to turn anymore. I can't function, at all. I lose time. I forget what year it is. I am 31. I need help. I don't even care if a surgery wouldn't work on me, I'd do it. I'd do anything. Can anyone out there help me?

    I lost my job in October and probably really can't work anymore. Denied disability, which booted my chance for unemployment. I am under extreme stress and am not so sure what will kill me first, the finances or the health. I am always in pain, and I get angry a lot because the pain takes so much out of me. I can't sleep right and I am always exhausted. I haven't received treatment so I just slowly watch myself and my life wither away. After all these years, I wish it to go faster at this point if it's not gonna get better or even manageable.

    What could I do?

  2. #2
    Please don't give up! Reapply for SSID (it took my mom 2 tries, and she'd had a heart attact & stroke!) and maybe contact a disability lawyer about it. They often will work on a payment schedule to help you.

  3. #3
    Moderator jody's Avatar
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    have you had an MRI? once you have been rejected you should appeal. the judge who rejected you may then send you to a neurologist of his or her choosing. this happened to me. I was sent to two separate neurologists to discount my claim for disability. both neurologists confirmed paralysis, and neurological signs. and evoked potential was ordered as well as a rectal exam that further confirmed diagnosis of neuralgic injury. I was then granted disability based on the findings of the appointed specialists which were hired to discount my claim to ssdi. when I applied I had documentation and films from my own physicians which were ignored by the disability judge. it actually helped to be examined by doctors of her choosing. she seemed pretty disapointed that I did not pass the exams as a faker. for the sleep paralasis. you may not like what I am about to say. I have this. it went away when I used weed for several years. it has returned now that I no longer smoke, I would not advise using it though until after your disability trials unless you are living in a legal state.

  4. #4
    Moderator jody's Avatar
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    please fill in your profile properly.

  5. #5
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    a couple suggestions. First, I agree to not give up. We are always here for you - nearly 24/7. Try going to a website, disabilitykey to get hints on applying for ssdi. The other thing you must do in completing all paper work is to use your worst day as the normal day comparison. NO employer is going to consider an average of your days, and keep youy on for that. S/he will only consdier your worst and most unproductive days.
    Also, there is a simple blood test for narcolepsy your doctor can request. The only problems is that 25 of the population will have positive results, and not have narcolepsy. This is why a diary of your symptoms is very important to keep and take with you to the doctor.
    Are you using a c-pap mask? Be aware that are many different types and styles. If one does not work, try another, but return it within 48 hours so it does not cost you. Be sure the therapist is certified.
    I would ask your doctor to refer you to a pain specialist, if you can. Also, if your pain is localized, you can ask for a prescription for lidoderm pain patches, if the doctor feels it would help.

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