OK, my head’s going nuts right now.
The autonomic specialist yesterday wouldn’t 100% rule out POTS, so he ordered FULL autonomic testing – tilt-table, deep-breathing, and Valsalva maneuver, plus “QSART” (it measures resting skin temperature, resting sweat output, and stimulated sweat output – nerve fibers, autonomic system’s regulation of sweat glands, etc). The tests are scheduled for OCTOBER 6!
Hecox e-mailed today that, quote, “We are closing in on a diagnosis of vestibular neuritis … secondary to EBV virus infection (the most common cause of neuronitis in adults).”
Hecox still wants me to still get the ENG performed, as well as the autonomic stuff, and then (when he’s “decided”, I guess, that it’s VN) go to get VRT, “the most effective intervention.”
Mom & Dad think this may be POTS, so the doctor yesterday instructed us to try “increasing sodium intake and water intake.” Basically, the treatment for the next 3 days is SALT TABLETS AND WATER!
When speaking with the autonomic guy, they stated that Hain is “out of the loop, as far as we’re concerned,” mostly because (1) his clinic is poor at returning calls or e-mails, (2) they make you feel rushed and all but shove you out the door as soon as your 30 minutes are up – very poor at making patients feel cared about, etc., and (3) Hain’s/Cherchi’s first drug didn’t work and the second made me worse.
WHAT DO I DO?! The one guy that my folks regard as “the god of neurology” is about to shove me back onto a VN diagnosis. The only good that can come of it is VRT, which will either work or make me terrible (thus, practically diagnosing MAV if it does – but the others don’t buy that). If the salt/water treatment fails to work, I’ll being pushed onto Diamox shortly – while I wait for the ENG and autonomic testing.
ALL SAID … my folks are so utterly disillusioned / PO’d with Hain and his practice that they won’t even have me go to his office (in CHICAGO – near me – not MILWAUKEE) for the ENG. Admittedly, his practice’s ways are very poor. The doctors NEED to return e-mails, and they NEED to not be watching the clock the entire time you’re there on follow-ups, or else you just feel like they don’t care much about hearing what you have to say … nor getting you well. But clearly HECOX doesn’t even REALLY consider MAV probable, and I’m supposed to go through a month of waiting just to get autonomic testing?
Even if I can get that shoved aside, and go to VRT, and it doesn’t work, and Hecox decides he’s finally stumped, I don’t know HOW to convince my folks to return to MAV and Hain. I am ABOUT to be pushed on an endless-looking loop of ENG’s, autonomic tests, Diamox, and ultimately, once again, a diagnosis of Vestibular Neuritis, and God Himself probably would have a hard time getting them to let me turn back on Hecox and return to Hain. I WILL DO VRT IF IT GOES SO BAD THAT IT WOULD PROVE MAV TO HAIN OR SOMEONE LIKE HIM, BUT I CANNOT GO BACK ON THE VN-DIAGNOSIS ROUTE! How do I make my case that we are going the wrong way and about to go a lot further down that road?
Anyone, please help!