So, I have Autonamic Disfunction

I'm sorry to hear that, but hopefully the neuro will be able to help. From what I've read, it seems that autonomic dysfunction accompanies autoimmune diseases, including IBD (http://www.ncbi.nlm.nih.gov/pubmed/19727003, http://www.ccfa.org/chapters/georgia/media/pdf/Stuff%20They%20Forgot%20to%20tell%20you%20about%20%20Dr%20David%20Binion.pdf).

I seem to have some symptoms of autonomic dysfunction (but also adrenal insufficiency and chronic fatigue syndrome...so who knows). I want my health back, too! I'm too young to have such a failed body.

Keep us updated.

Hmmm, dysautonomia huh? I was just re-diagnosed with Atrial Fibrillation, which is a heart arrhythmia which could very well fit into the definition of autonamic disfunction . I’ve had this before, at about the same time as I was diagnosed with UC, and my cardio doc was able it “cardiovert“ me back to normal sinus rhythm, and that held for several years.

Well it came back!

The biggest problem I have with it is that routine treatment includes anticoagulants (blood thinners) like warfarin and the associated increased risk of bleeding. THAT doesn’t set well with UC, where even taking a couple of naproxen tablets can induce a flare.

My cardio docs have an attitude, perhaps justified, that cardio trumps GI; and I’m pretty sure I’m not going to be able to talk them out of giving me warfarin. And I’m not sure I want to, but I’m pretty sure I can look forward to more blood in the bowl!

It is multipule tests.  It took over 4 hours to do them all.  The first was a tilt table test, then a breathing test, then a shock test all while you are hooked up to monitors.  These weren't to bad.  The one I hated was the hot room.  You get in one of there bikinis and then you lay on your back and can't move in a hot hot room with googles and a shower cap on and then you get this orange powder all over the front of you and you stay in the room until your temp reaches 38.  Well, mine didn't and I had to sit in there for an hour.  The powder turns purple and it stains your skin and it stayed on me for days.  I was ready to go crazy in there. I don't like being hot. It was a mess.  Thank God i didn't have to go to the bathroom.

What I read was they just treat the symptoms.  So for heart palpatations they give you stuff for that.  Anxiety stuff for that.  Fatigue stuff for that.  Joint and muscle pain stuff for that.  It sucks because I am on so much already I really don't want to go on more. 

I thought you guys might find this funny.  The neurology department called me yestersay to set up an appointment because my GI gave me a referral.  Well, she said the doctor wants me to set you up with the first available appointment.  I say ok and she says that is April 19th at 10:00.  I was like ahhh okay!!! So, I won't know anything until then I guess.  It doesn't really bug me because while I hurt(my joints) I can live with it and my fatigue is horrible but it has been for 3 years.  But I thought that was funny.