My Thankful post: After 4 years I got a diagnosis: Autonomic Dysfunction anyone?

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Posted 11/28/2013 by Jamie-Lynn in NSBR Board
 

Jamie-Lynn
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March 2002
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Posted: 11/28/2013 10:23:16 PM
After almost 4 years of searching, we finally have a diagnosis, Autonomic Dysfunction. It affects all of the automatic functions your body normally does without problems.

For me it affects my blood pressure (drops when I stand up), pulse (it's been over 100 since I got sick again in May), and gi tract (my stomach swells up to a 15 month pregnant woman and hurts likewise.)

I will never be able to go back to teaching. Any little virus I get can set me back up to 2 years. My doctor wants me to get a motorized chair as I will never have the energy/blood pressure to walk very far. He said I can use my walker for very very short distances.

However, I am thankful it has not affected my heart yet (my family has a history of heart disease.) I'm also thankful I now know what I have and can do little things to make my life a bit better. (Like drinking alot, alot of water.)

I have to add how proud of my son who started high school this year. The days I could go to competition (when dh was off and could help me) my son never worried about me showing up being pushed on my walker. He also wanted to stand up for me in a store when two old bities didn't think they should have to move from the middle of an aisle for the wheelchair I was in.

I just want to say a big thanks to all those who gave suggestions while we tried to figure this out!
Have any of you had experience with this or know someone who has it?


Jamie




SueSume
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Posted: 11/28/2013 10:29:51 PM
I have experience with this, but just wanted to say wowza! That's a lot to deal with and your attitude is amazing, good for you


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WingNut
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Posted: 11/28/2013 10:48:10 PM
That's a rough diagnosis, to be sure. Having answers will hopefully lead to important changes and treatments that can make your day to day living better.

{{{{ hugs }}}}


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Mary Kay Lady
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Posted: 11/28/2013 11:05:21 PM

Wow, I can't even begin to imagine how frustrating it must have been for you to have to experience 4 years of challenges before getting a correct diagnosis.

At least now you know what it is and can make a plan of how to deal with it. I'm proud of you that you have such a postive upbeat attitude about this.



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lana
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Posted: 11/29/2013 3:35:10 AM
So sorry to hear this. My sister suffers from this.... Diarrhea because the autonomic controls water content of bowels, huge drops in blood pressure when changing position. And it us not well recognized. Diagnosis was a long time in coming. Hers was the result of nerve damage caused by diabetes that was not well controlled. I hope you are not dealing with diabetes, too. She has also list kidney function so spends three mornIngs a week in dialysis and has lost her eyesight. Take care of yourself as best you can!

mikklynn
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Posted: 11/29/2013 6:56:53 AM
I am sorry you are dealing with this! Your positive attitude comes through, and I love you for this.

(((Hugs))) to you!


Lynn



Peabay
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Posted: 11/29/2013 6:58:35 AM
I've never heard of it before. I'm glad you have some answers and I wish you the very best.


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