What I don’t have.

More as a record for my own reference than anything else – here’s what I’ve been tested for and *don’t* have:

  • Lupus (blood test)
  • Lyme (blood test)
  • Sjogren’s syndrome (blood test)
  • Carpal tunnel syndrome (EMG and nerve conduction test)
  • Ulnar radiculopathy (EMG and nerve conduction test)
  • Cervical spinal issues (MRI)
  • pheochromacytoma (blood test and 24 hour urine)

Tests I’ve had that have been inconclusive or gone wrong:

  • ARR (blood test, inconclusive, slightly high aldo, slightly low renin, but my low salt diet could have that affect)
  • 24 hour urine for hyperaldosteronism (one inconclusive, one done wrong)
  • Trial of Eplerenone (which should have worked if I had PA again; it didn’t work – it actually *raised* my blood pressure, like most BP meds have historically done)
  • Two specialists (nephrologist and endocrinologist) do not believe I have PA in my remaining adrenal

Good times coming up next week:

  • Holter monitor
  • EKG
  • Yet another new endocrinologist (third time’s a charm?)

Current diagnosis:

  • Hypokalemia (this is the on-paper Dx)

Current symptoms:

  • Sudden shifts in potassium
  • Palpitations/irregular heartbeat
  • Erratic blood pressure
  • Headaches
  • Frozen left trapezius muscle, pain and weakness in left shoulder, arm and hand
  • Dizziness upon standing too quickly
  • and probably entirely unrelated, but so weird that I have to include it: hyperalphalipoproteinemia (HDL 161, trigs 69, and LDL 89, and no, those are not typos)

The most recent doctor’s opinion: “some sort of electrolyte problem, probably genetic, causing potassium shifts.” Something in the category of channelopathies, and he does not believe I’ll ever find someone who can tell me exactly what since the genetic testing for this is inaccessible to a mere mortal like myself. His recommended treatment is to keep on doing what I’m doing and adjust as necessary.

In other words, don’t let it get too low or you’ll die. But don’t let it get too high or you’ll die. Fair enough, I know the low signs well enough and probably will never have to worry about high, but – what happens if/when that no longer works?? I’m planning on living for quite a bit longer, ya know…

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