Tuesday, October 27, 2009

More Trees

Hi. Back from our first appt with a local cardiologist - Dr. Nazari. Funny, great, personable, but also very honest that POTS sucks and all the treatment is trial-and-error. So frustrating. "POTS is an orphan disease -neurologists, cardiologists, rheumatologists - nobody wants it." [Me neither.]
  • Very happy I only had to do an EKG. Stats: 124/64, HR 50. No blood tests! Yay!
  • Their office is, how shall I say, thumbs-up. Only 5 minutes in the waiting room, and my Rx had been emailed to the pharmacy before we left! :) Communication SO much more efficient than at the other doc's.
  • I'm starting Mestonin (Pyridostigmine) - a drug commonly used to treat muscle weakness in patients with myasthenia gravis. Results should be pretty immediate.
  • Potentially making an appt to see Dr. Suarez in Toledo, Ohio. Dr. Nazari said it's a long wait but worth it. The biggest names in autonomic disorders are there, and the next tier can be found at Vanderbilt, NYU, and Mayo.
  • Interesting tidbit my mom found - "Fifty percent of POTS patients know the exact day they got POTS." Count me in.
And if nothing else works, we know the barometric pressure in San Diego does not fluctuate. Some patients are totally asymptomatic there. Fab.

Um. What else. Pupils are weird again. I'm tired.

healthcare lobbyists!

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