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    Posted January 22, 2014 by
    mmmcat
    Location
    Lake Saint Louis, Missouri
    Assignment
    Assignment
    This iReport is part of an assignment:
    Living with a rare disease?

    Living with Autoimmune Autonomic Neuropathy

     
    Autonomic Neuropathy. Old people get this. Doctors know what it is when they see an 80 year old when their autonomic nervous system functions don't work so well anymore.

    But what happens when you are in your 50's and your Autoimmune system goes haywire and begins to start shutting down your Autonomic Nervous system? Well, some pretty nasty signs and symptoms arise. Think about all of your" fight or flight" and "rest and digest" functions. The things your body does, it's housekeeping activities, while you don't even think about it. Nor do you want to. You shouldn't have to. That's what it does! Well, not in this case.

    This is called Autoimmune Autonomic Neuropathy or Autoimmune Autonomic Ganglionopathy. It is caused by the Acetlycholine Receptor Ganglionic Antibody (AchR G AB.) This is the same receptor that causes Myasthenia Gravis (but in that case it is the Nicotinic Antibody. And it attacks the muscles only and NOT the ENTIRE Autonomic Nervous System.) Everybody feels sorry for somebody who has MG. But AAN/AAG? "What the heck is that??" I've had doctors tell me "I have no idea what you are talking about!!"

    It is a diagnosis no one wants to hear. It affects less than 3-5/1,000,000 people in the US. Honestly, I would rather have a more common, yet perceived "scary" disease because there is public awareness, support groups, federal funding, 5K runs, Trivia nights! "Oh, I am SO sorry you have cancer/MS/MD/MG." What I hear is "What the heck is that?"

    I WOULD HAVE A PROGNOSIS...

    So, I suffer alone, knowing that I will probably never meet anyone else with #Autoimmune Autonomic Neuropathy. My husband cares for me day in and day out, relentlessly, selflessly, knowing the true meaning of "for better and for WORSE."

    Currently I am waiting (in vain it seems) while the insurance companies take their time to decide whether I am sick enough to be treated with #Plasmapheresis, IVIG or if bad enough, #Chemotherapy.

    In the interim, I don't digest, I don't poop. I wear an adult diaper. I freeze when it is 94 degrees out. I don't sweat. I cannot think clearly. I faint when I stand up. I take handfulls of pills a day. My heart races incessantly as if I were about to take stage on Broadway. All because my #Autoimmune system thinks that my normal body functions are a foreign invader. I have burned a whole in the couch where I lay daily with a heating pad on me.

    Fun, huh? Not so much. But thank you for asking.
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