POTS Awareness Week

POTS Awareness week starts today! Some good friends of mine helped to create this image for me (and fellow POTSies!)

One heck of a doctor's visit

Boyfriend and I made the trek to meet the new specialist. Outside of having a horrible POTS day, it was actually a fairly pleasant 45 minute drive thanks to light traffic and the way my boyfriend speeds (lol).

As soon as we got there, they took us immediately and I was talking to a doctor within minutes. The office definitely gets some serious points with me for being on time! The first doctor I saw was actually shadowing the specialist I was there to see. He took care of all the preliminary stuff: BPs, a thorough stethoscope exam, family history, going over all of my symptoms and previous testing.

Then, the doctor came in and went over everything. He also did an examination of his own. He then sent me to have an arterial ultrasound and a TBI right while I was there.

To make a long story short, here were his opinions/thoughts/comments:

- I don’t have EDS. Apparently people who have EDS tend to have a lot of the same physical features (eyes, nose, chins, etc) almost like someone who has, say, Down Syndrome. I don’t have those. Plus, if I had vascular EDS, I would have had ruptures and several aneurysms by now which all of my tests have shown that I haven’t. (They would have shown if they’d happened in the past a well.) That wasn’t entirely shocking as I read last night that people with vascular EDS have serious problems if they reach their 20s, and often die in their 40s. Needless to say, I’m relieved that I don’t have it. (I wish there was a definitive test that they could do. I’d feel better with a definite no.)

- I don’t have Raynauds phenomenon. The color that my hand/foot turns isn’t consistent with Raynauds. The fact that the ‘episodes’ aren’t related to cold is another point. With RP, the color changes are entirely related to temperature. While it’s still possible, in theory, that it’s RP, he’s treated a lot of people with it and is fairly certain it’s not that.

- The good news is that all the super serious things have been ruled out. No FMD, no EDS, etc. (Though I'm debating a second opinion on the EDS just to be safe)

- In the end, he’s just as mystified as everyone else. He wants me to have two tests. One is a blood panel for lupus (which has been in my family) and other rare rheumatological disorders. He doesn’t think it will come up positive for anything, but after about a million rounds so far this year, bloodwork is a cake walk for me and he wants to be sure. The other is some sort of rheumatology test to check the blood flow down into my hands. From what he said, it seemed like an ABI but for my arms and fingers. I’ll get my resting results, and then I’ll do a few arm exercises and take those results as well. It’s non-invasive so it’s not a big deal…just annoying that I have to drive all the way back there for it. I also have to keep a diary of my ‘episodes’ and what I’m doing during them. (One more thing to keep track of. Ugh!)

I shad my bloodwork earlier this week and they’re going to call me about scheduling my test. I scheduled my follow up for everything to be on December 30th. While I know it’s optimistic (and possibly delusional), I’m hoping that, no matter what the diagnosis is, I’ll be done with all of this before the new year. (Obviously, I’ll still be treating my POTS and that’s not included in that goal lol)