Thursday, July 18, 2013

Plot Twists

Things have been rather quiet on the blog lately, because just at the juncture of everything else quieting down, something we had been hoping was not a big deal jumped out of the bushes and sat on our chests.

Since May, DOB has been having occasional but noticeable episodes of . . . something. Sometimes he won't be able to move or talk. Sometimes he will be jerking uncontrollably. Sometimes he can talk, but with slurred or stuttering speech. Sometimes only a single area is affected, sometimes the whole body. They began rarely and under significant stress, but have increased in frequency and duration. Now that they have become noticeable, we recognize that he has had them before--but on the order of once a year or so, and usually while sick or otherwise under circumstances easy to dismiss.

What the doctors have figured out so far is what they're not: they're not strokes, or heart attacks, or seizures (turns out if you are having a *real* seizure, and you go jerky on both sides, you pass out). They're not, apparently, life threatening, as long as he doesn't have one while he is driving. (ER Doctor: "You do *not* drive yourself to the hospital to be evaluated for paralysis!") So now I am driving the truck, a terrifying change for both of us, although the ducklings have managed to remain calm.

The current odds-on favorite is a rare genetic disorder connected to the body's handling of potassium--the symptoms match pretty well, but so far the blood tests have not confirmed it. However, the hospital managed to botch the critical tube of blood, plus sometimes it doesn't show up in the numbers. So it hasn't been ruled out yet either. Coping with just one rare crippling genetic disorder is for underachievers, apparently. (He's been diagnosed with Charcot-Marie-Tooth, a condition affecting the nerves in the extremities, since infancy, for those not up on our medical files. Progression of that has put him in a wheelchair or braces since last winter.)

If that is it, it operates a lot like migraines with various triggers precipitating the attacks. (And various medications keeping them more manageable but not curing it.) We are wondering if he can use this to his advantage at work: if stress is a trigger, is it a "reasonable accommodation" under the ADA to insist he win every hearing? In the meantime, the court reporters will just have to put up with a lot of stuttering and spoonerisms.

Anyway, whatever it is, the consensus is that it's very strange. (ER Doctor: "I will never see another patient with symptoms like this.") If this were a House episode, we could be reasonably assured that it would be figured out in the next forty-five minutes, after two wrong diagnoses, one of which would be nearly fatal. But life seldom follows such neat plot arcs.

In the meantime, I really need to learn to keep reading material in my purse. Dante omitted the level of hell where persons afflicted with impatience are kept in hospital rooms with only a four-month-old copy of a Seattle art scene magazine for company.


Silvia said...

I have written and deleted this comment several times. I do not know how or what to write.

I will be praying for you and your family, for your husband.

Diary of an Autodidact said...

Usual thoughts, prayers, etc.

Bonus points for the House reference.

Court reporters hate me too: I tend to speed up when I get nervous. I'll probably be the cause of a Workman's Compensation claim...

Wendy said...

I so wish I lived close enough to help with ducklings or food!

We will all be praying for you.

Brandy Vencel said...

I will be praying for you, too, QOC.

In the meantime can I just say that this sentence--

"Dante omitted the level of hell where persons afflicted with impatience are kept in hospital rooms with only a four-month-old copy of a Seattle art scene magazine for company."

--was so perfect that I read it three times for pure delight. ♥