Toxicology Update

[ks42]

So I had posted before about the fact that both my spouse and I have sudden onset POTS (we got it within months of each other), diagnosed via ARS at Mayo, and our doctors are really aggressively looking for some kind of exposure or infection that either set it off, or is still active.

So today, we had an appointment with a medical toxicologist at one of the local hospitals. Unfortunately, the one that we were referred to had stopped taking clinical patients, so we had to see his associate. Well, the first thing he asked both of us was if we'd seen a psychiatrist, and had we tried psychotherapy. He kept harping on that throughout the entire appointment. He then gave us the third degree about medications we'd taken years ago (they were in an old record sent over from our PCP) and basically implied we were drug addicts (the old meds in my file were pretty benign - like metoprolol and gabapentin, lol). Eventually, it came out that he'd seen a POTS patient before, and doesn't believe POTS or autonomic dysfunction is really a legitimate illness. And even if it was, he said there was no way it could ever be caused by any type of exposure. But basically, he thinks it's all psychosomatic. He also told us that mold exposure doesn't ever make anyone sick (even if it's black mold); that it's all hype. And he separated us at one point to "see if your stories match up or if you're lying". Made me wonder why they agreed to take our case, since they only see a few patients clinically and are highly selective about which patients they'll take on.

Fortunately, we have two neuros, a cardio, a GI, a PCP, and even psychiatrists who do believe we're both ill, who are all really working hard to get us diagnosed and treated. But I wanted to rant about it, because it makes me sad that there are docs out there treating POTS patients like this.

For right now, we are waiting for results of more testing done through a new neuro (bloodwork and SFN biopsies). We've also been referred to infectious disease and pulmonology; we're going to wait for these results & appointments, see what they say, and then if we need to will find a new toxicologist later on.

[AliceP]

That sounds so stressful! I'm sorry. Rant away... Wish I could say something to help, but I know it's just not that simple.

[corina]

I'm so sorry. Unfortunately it happens to a lot of us, but pleae don't let it get you down. Hope the test results and upcoming appointments will get you answers for you and your docs to work with. All the best!

[Katybug]

I'm sorry. It sounds like he doesn't believe in more than just POTS. Kind of makes me wonder why he's a toxicologist. He doesn't seem to believe in things that are fairly mainstream medicine these days. My primary tested me for heavy metals and some other things before we ever heard about POTS. It's sad that a doctor would treat anyone this way.

[momandmore]

Yuck.

I hope you find answers and I'm sorry you had to go through that.

[fitnesskelly]

Wow, I think I would consider writing the medical board in your state. What a bunch of **.

[p8d]

I'm so sorry you had to go through that. It's so frustrating dealing with this stuff without idiots like that. I sincerely hope you get to the bottom of it all.

[ks42]

Thanks everyone! Yeah, it's frustrating, and thanks for letting me vent. Although I do have to say, I feel lucky that I don't encounter docs like him more often. I really feel for those of us who have to deal with docs like this on a regular basis!

Katybug - I had the same thought. I do wonder why he became a toxicologist, he seems dismissive of so much that, like you said, has been a part of mainstream medicine for awhile!