Saturday, April 02, 2005

C5: Limbo again

Today is my fifth day on two grams of IV push ceftriaxone. Today's dose will be the last one in this series. Maybe in a month or so I'll do it again.

The doctor from the ALS clinic called yesterday about the results for that definitive test for adrenomyeloneuropathy:


According to the lab, my test for very long chain fatty acids is normal. The only problem is, two of the three markers are abnormal, and the third is right up next to abnormal.

The clinic doctor says she talked to the lab doctor, and the lab doctor told her emphatically that despite the near-miss nature of the results, my results are normal. The clinic doctor is asking for more detail on where I fall in the expected range.

No, I don't have the numbers yet. I'll be getting those from the clinic. Oh, and just to make you feel more secure about all this, I heard a rumor that the doctor who asked for the test is leaving the clinic.

Anyway, it apparently mattered whether I fasted for the test or not. I had. I slept all night, skipped breakfast, and then had the blood drawn. The lab doctor is reported to have said that my strange results were in part explained by the fact that I was not fasting. But the clinic doctor set her straight, that I was. It even says so on the lab report.

This syndrome, which I have not researched, apparently strikes adolescent boys and makes them blind. Yeah, hyuck-hyuck, I appreciate the jokes. But my vision is 20-20. When I was a kid it was better than 20-20. The clinic doctor said that she thinks it is possible, and worth investigating, whether I am a borderline case. It seems very rare that adults would get this.

Maybe it would mess me up in some ways but not others? ALS is like that: It impairs different individuals in different ways. I don't even know if this thing has any treatments.

Welcome back to limbo.

She also said that given my high LDL cholesterol, I should be on Lipitor. But you know, my cardiac risk profile is low, and these clinic people are pill happy, so I have an impulse to let that slide. However, if there is something weird going on with me metabolically, I wouldn't mind playing games with it in the near future, such as lowering my cholesterol and seeing if that had an effect on my degeneration.

I infused my last dose of ceftriaxone for this round and took the IV out myself. The flexible plastic tube that resides inside your vein is a lot longer than I thought it would be:

The left grip returns from the infusion period with the same score it had on the first infusion day: 46 pounds (44, 45, 46), while right grip is 98 pounds (92, 97, 98), left leg balance is 7.31 seconds, and inhale volume is 4750 mL.

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