Dysautonomia (Autonomic Dysfunction) Community
What to expect from the tests?
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This patient support community is for discussions relating to Dysautonomia (Autonomic Dysfunction) including: Postural orthostatic tachycardia syndrome (POTS), neurocardiogenic syncope, mitral valve prolapse dysautonomia, pure autonomic failure, autonomic instability and others.

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What to expect from the tests?

I have been experiencing issues since I was a teenager.  I am now 38 & still undiagnosed.  I should find out on Monday 8/11, I should be finding out when my appointment times are.  I will be going to The Cleveland Clinic.  The dr there recommend me to see:  Neuromuscular, Brain Center, Syncope Clinic/Cardiology, Gastroenterology & General Neurology.  I assume they will do a TTT, which worries because my last one was inconclusive as they couldn't read my BP or pulse.  I was diagnosed w/Postural Hypotenstion when I was 15 or 16, but these past several years, new symptoms pop up every time I turn around.  Falls, bradycardia/tachycardia (had a defibrillator/pace maker implanted in August of last year.  Severe digestive problems w/severe weight loss, I got down to 92 lbs & although I'm at 105 now, it just keeps going up & down, but mostly down.  

My question is, what am I to expect from the tests?  I know it will not be fun, but I have NO clue what to expect & I am terrified & alone.  Even with my family around, I feel like no one understands, they all are tired of taking care of me & that i am a burden.  I've pretty much lost all of my friends due to my health, & the couple friends I do have live in another state & just aren't there for me in ANY kind of capacity, not even just to vent to someone.  
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I'm so sorry I didn't see this until after your day of testing! How did it go? How are you feeling now?

It is really hard to cope with all this if you don't have a good support system. I hope if you get more diagnostic clarity, it will help the people in your life understand you more and what they can do to help you and support you more.

I definitely understand the quandry of having your closest friends live far away. Many of us make connections online when we're ill like this, and don't have as many close bonds "in real life." It is what it is. Better to have some connection, however far away, than none at all.

I hope your appointments for testing went well.
-H.
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