If you follow the ALS email group, you know that there was a story about a woman. Forgive me if I mishandle some of the details, but I think she got married in 2003, was pregnant when they told her she had ALS, then died recently at the age of 39, with her one-year-old son attending her memorial service. You know this is not only unfair, it is wrong. I know how extremely fortunate I am to still be tucking my kids in to bed, losing over the course of the last year as much functionality as that poor woman must have lost in a week. My kids rode horsey on my back last night. Lucky. Perspective.
The ALS clinic finally mailed me my blood work results from well nigh a month ago. The test for very long chain fatty acids (the one that would definitively give me a different, or perhaps just an added diagnosis) ... is still pending. They're going to mail that to the ALS clinic. And then we can start the comedy of me trying to get the results from the clinic all over again.
But my cholesterol picture continues to improve. And my bilirubin, while high due to my Gilbert's Syndrome, was down almost a half from when I was taking riluzole.
The abnormals are bolded:
Triglycerides: 127 mg/dL, normal: 0-149
Cholesterol 242 mg/dL, normal: 100-199
---HDL (high-density, the "good" cholesterol) 66 mg/dL, normal: 40-59
---LDL (low-density, the "bad" cholesterol) 151 mg/dL, normal: 0-99
---VLDL (very low density, "very bad") 25 mg/dL, normal: 5-40
Bilirubin 2.7 mg/dL, normal: 0.1-1.2
Glucose 82 mg/dL, normal: 65-99
Urea Nitrogen ("BUN?") 19 mg/dL, normal 5-26
Creatinine 0.9 mg/dL, normal 0.5-1.5
BUN/Creatinine ratio: 21, normal: 8-27
Calcium 10.3 mg/dL, normal 8.5-10.6
Sodium 144 mmol/L, normal 135-148
Potassium 5.1 mmol/L, normal 3.5-5.3
CO2 33 mmol/L, normal 20-32
Chlorine 102 mmol/L, normal 96-109
Protien, total 7.5 g/dL, normal 6.0-8.5
Globulin 2.7 g/dL, normal 1.5.-4.5
A/G Ratio 1.7, normal 1.1-2.5
Alkalin Phosphotase 41 IU/L, normal 25-150
AST (SGOT) 24 IU/L, normal 0-40
ALT (SGPT) 32 IU/L, normal 0-40
Left grip is 50 pounds (50, 45, 47), right grip is 95 pounds (95, 92, 85), left leg balance is 7.48 seconds, and inhale volume is 4750 mL. On his dynamometer I scored a record 108 with the right hand and an unimpressive 41 with the left (compared to the 44 after the ceftriaxone). I weigh 137 pounds with no shoes, so my weight is maintaining or gaining.
We agreed that I would take the 4 grams of penicillin all at once, but only once a day. I'll start that tonight.
He gave me a free sample of Namenda, which is used in Alzheimer's as a glutamate antagonist. It may help with ALS. I am checking with the ALS email group to see if anyone has tried it.
Apparently the radiologist who requested the second MRI did see it, and responded that my situation seemed "improved" (compared to the MRI of a year ago) due to "more subtle" evidence of demyelenation.
The doc also thinks my speech is improved, though I had to tell him I think it is worse, at least in the sense of my feeling 'lazy tongue' much more commonly throughout the day.
He validated the possible legitimacy of my theory that the ceftriaxone already "cleaned the room" and now the penicillin is trying to clean it again, hence no dramatic improvement. But I wonder why the right hand is doing so well. I have no objection to the breathing score improving.
In the last few weeks I have enjoyed scratching my back about once a day with a comb, though I didn't use to think of it, ever. I mention this only in case it has some relevance to my condition or the drugs I am taking. My lovely wife inspected my back and didn't find a rash or hives or anything, though there may have been a small bug bite.