Sunday, January 31, 2016

Mayo update

So I've been waiting to write this.

And I'm still not ready.

I'm still processing.

Still questioning.

Because I don't believe in "the big reveal" with regard to health status, I will lead with this: the trip to Mayo was a positive one.

To begin, I really liked my doctor, Neurologist Elizabeth Coon. Not only is she a specialist in autonomic disorders, but she's also a wonderful listener and a compassionate healthcare provider. She and I had two appointments, and during those appointments, I felt I could trust her. Most importantly - and most unusually, given my experience with local doctors and with Mayo Jacksonville - I felt believed.

Throughout this illness, perhaps the hardest thing to endure aside from the symptoms was the brush off I received from physicians who simply refused to believe anything was wrong with me. After my Tilt Table and ANSAR tests, however, my dysautonomia could no longer be denied.

So I should say, that is my definitive diagnosis from the Mayo Autonomic Specialist: dysautonomia. Which, by this time, shouldn't really surprise any of my readers. What may be surprising, however, were the subsequent findings:

1. that my dysautonomia has hyperadrengenic qualities (like POTS - postural orthostatic tachycardia syndrome - but my heart rate fluctuations are not quite as severe). If you want some medical jargon about it, here goes: "These patients have similar HR increment to nonhyperadrenergic POTS, but tend to have prominent symptoms of sympathetic activation, such as palpitations, anxiety, tachycardia, and tremulousness. These patients have a larger fall in BP following ganglionic blockade with trimethaphan, and higher upright plasma norepinephrine levels than did nonhyperadrenergic POTS patients, presumably indicating a major role of orthostatic sympathetic activation. Elevation of plasma norepinephrine ≥600 pg/mL) was documented in 29.0% of patients tested in a recent study.

So that's that.

2. And this one is a big one - despite my symptoms of hyperhydrosis and pain/burning/numbness in the hands and feet and crawling/weakness sensations in the quads, Mayo's neurology tests conclude I DO NOT HAVE NEUROPATHY.

Friends, this finding alone was worth the trip.


Because neuropathy is bad. Left untreated, it can get real bad. And, as my dysautonomia is not caused by something treatable, like diabetic neuropathy, me having it would be real, real bad.

If you'd care to read more about the testing I had done, you can read about it here.

So those were the significant findings - based on those findings, Dr. Coon believes I have a good shot at improving. That, obviously, is exceptionally good news.

But try as I might, I just can't seem to get too excited.

Why? (You ask again, astonished)

Because I still feel like shit everyday.

And, despite Dr. Coon's thoughts that I will likely improve, I know that improvement - if it comes, and PLEASE GOD LET IT COME - will take time.

And a lot of effort.

And there's very little they can do in the mean time to help me feel more comfortable - ie. not crying in pain everyday from enduring a collection of the following symptoms:

Tachycardia, insomnia, variable blood pressure, blurred vision/inability of eyes to adjust to varied light sources, nausea, abdominal pain, early satiety, feeling of burning or nausea in the stomach, incessant sweating from the hands and feet, burning pain/numbness in the hands and feet, feeling of weakness or creepy crawly sensation in the thighs, daily fever, dry eye, lightheadedness, occasional syncope, panic attacks.

Likewise, I am concerned because some of the things I have read say the tests I had (referenced in detail above) are not particularly reliable for measuring neuropathy, which, of course, still scares the shit out of me. Is it neuropathy? I cannot seem to find it referred to as anything else in various medical journals. And, if not, then what is it that is presenting as neuropathy but isn't?

Lastly, I read this article by a Dr. Blair Grubb, who is renowned in the field. He says hyperadrenergic types of POTS are the worst of the kind, and will likely require lifelong treatment. You can read about that here. LIFE. LONG. TREATMENT. That's a scary prospect. And also one that carries with it potential problems. Because every med they can offer me has side effects. I actually thought I found a really good med about 2 months ago - and then, two months in, I'd gained 10 pounds, my breasts were very swollen and painful, and my hair started falling out en masse. So I am more than just a little scared of the medicines and their potential side effects.

I am hopeful but confused.

Happy but still scared.

And still in a lot of pain.

And likely will be for a long time.