What I don’t have, Part Two.

In addition to the previously-posted list, I’ve been thoroughly screened for just about all forms of thyroid disease and diabetes. All negative. I’ve seen the new endocrinologist and aside from that thorough screening, she’s having me test my blood glucose whenever I have symptoms. To recap, the symptoms are primarily: left trapezius muscle spasm, headache, blurred vision, palpitations, dizziness, and elevated blood pressure. So far, when any or all of these have occurred, my blood glucose has been steadily 75-78.

The good news, though, is that I’ve had fewer and fewer episodes of symptoms since beginning to follow the dietary treatment for hypokalemic periodic paralysis. At my last doctor visit of the year yesterday, my serum K+ was 5.0 and my blood pressure was 122/83 – this, from a girl with severe white-coat syndrome! My home average is a bit higher, 133/80, but that’s a running average that includes the days I’ve had, for lack of a better term, episodes.

In order to control the episodes, for now what I need to do is pretty simple:

  • Avoid dietary sodium and carbohydrates
  • Avoid alcohol
  • Avoid decongestants and vitamins/supplements (and possibly other meds as yet undetermined)
  • Avoid getting too cold (I bought three new coats!)
  • Keep serum K+ in the 5.0-5.5 range (still taking supplements, but going to try to reduce the dose and see what happens)

All of that is really pretty easily done; with my allergies, the decongestant bit might be the biggest challenge and is still being figured out.

So after all that – what do I have? I’m still being told I may never be able to put a name to it. Being a librarian, nomenclature and classification is second-nature to me – I’m trying to let that go for now, but the reality is that there are some practical considerations to this. (What if I have to move, and have to start over with a new doctor? being the main one of course.) But as a wise person once said – I’m not going to jump off that bridge until I get to it.

Advertisements