Well, I had my consultation with Dr. Goodman this morning. As always, he was terrific. If you have POTS, Dr. G. really is the best of the best. He was not shocked at all to hear of my symptoms. He said that its common for us POTSies to have extreme symptoms after surgery. They aren't sure of the mechanisms but something about the surgery seems to fire up our autoimmune systems. Unfortunately, this doesn't always show up in blood work.
He also noted that I have joint hyper mobility. Anyone familiar with POTS, Ehlers Danlos Syndrome, and Mast Cell Activation Disorder knows that these three things commonly go together. Since my surgery, I've thought I might be a lucky winner who has this trio diagnosis. Dr. G. seems to think the same. For now this is all speculation.
Tomorrow, I will be the human pin cushion. Blood work and catecholemine tests in the morning. It's the test where you lie flat in a dark room for thirty minutes, they draw blood, then you stand with the lights on and they draw more blood. This tests your body's chemical response between being relaxed verses stimulated. Tomorrow, I will also do the Autonomic Reflex Screening. This consists of the Tilt Table Test, some breathing exercises, and a sweat/temperature test. All of this before noon! I expect to be completely worn out by then! Oh, I'll also be doing a 24 hour urine collection. Lucky me! I get to carry around a pee jug all day!
He has more tests planned for later in the week to address my anemia and head pressure issues. One day at a time, though! So for now I am relaxing and resting. A huge weight has been lifted off my shoulders and I'm finally getting some answers and help! Hooray!
Amy
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