Not Good just been diagnosed with Pure Autonomic Failure

After seeing a neurologist he immediately diagnosed me with autonomic failure, following gastroparesis, slow colon, a cat eye, tachyardia upon standing, low blood pressure, now still on a nj tube. Anyone out there can help me with this disease and let me know the life expcentancy?
I have two young kids and am becoming very concerned.
They are also doing a spinal tap and a MRI and sending me to Dr. Lowe a world known neurolgist for autonomic neuropathy he has even wrote a book on it lucky that he is near by where i live he is in halifax ns.
I am running hydralyte through my nj tube mixed with formula in order to be able to function right now and am stable hoping this doesnt keep pregressing so fast.
He is talking to dr.lowe about possibly starting IVIG to see if I will benenfet from it.
Who knows right now learning to live one day at a time and enjoying my childern and husband right now life truly is a gift I wish more people would realize this.

KIM

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When I looked it up on the Internet it said most have the average life expectancy. I do not know much about it but when I was reading it said if you drink a whole bunch of water it can help with the symptoms. Like I said I do not know that much but hopefully this helps. I think the name of it leads us to believe it is a sudden deadly thing because it says failure but while I was reading it stated numerous times that most people live to the average age. I hope this helps you and I am sorry i couldn't give you more information. I will pray that all of your testing goes well and I will have you in my thoughts. I also hope you get some relief from your pain and symptoms.
God Bless, Allison

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Thank you I run fluids mixed in with my food through my tube and it helps just hoping it stops progressing so darn fast.

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I have autonomic dysfunction which my neurologist believes is causing my Gastroparesis, constipation and esophageal aperistalsis. I too have low blood pressure and POTS for which he suggested increasing fluids and increasing salt. If that doesn't work going to try Midodrine. My sweat test came back abnormal which explains why my symptoms seem worse in warm weather. It's my understanding that even though there is no cure for these autonomic dysfunctions there are ways to manage it. So far I have been able to manage my gastroparesis with domperidone and liquid/puréed diet. And amitza has helped with constipation. So stable for now. And that's a blessing indeed.

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I am hoping I dont start with problems swallowing i can still swallow some foods. But rely on my tube for liquids and hydration. i tryed increasing fluids salt , failed miserably thats what led to the tube, my whole gi tract is deciding to shut down.

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