Purpose:ALS (Amyotrophic Lateral Sclerosis)(Started Feb 16, 2012)
Date
Dosage
Perceived effectiveness
Side Effects
Adherence
Burden
Feb 21, 2012
Major
Mild
Always
Somewhat
Date
Feb 21, 2012
Advice & Tips
DOSAGE & ADMINISTRATION: Infused 40 ml WF10 per day for 4 consecutive days. It was diluted in 400 ml 0.9% saline IV Bag and flushed with saline to ensure 100% usage. This is 0.5 mg/kg per day, thought to be equivalent to 2 mg/kg sodium chlorite and same amount of active ingredient as high dose NP001. Infusion times were varied from 2.5 hours to 1.5 hours. Began 17 weeks from last NP001 infusion.
BENEFITS:
Hands uncurled mostly and have become more "flexible" and dexterous, beginning day 1.
Walking has improved significantly. Balance, gait speed and foot lift improved and were noticed by several others on 3rd day, without me commenting. Continued improvement on day 3 thru 6. Was highly dependent on cane, now again am confident without.
Speech has improved, to where some words and phrases are understandable again.
Swallowing better.
Cough far more productive from day 2.
Elimination of minor day drooling, and even while sleeping.
SIDE EFFECTS:
No site pain was experienced, even when using same catheter on consecutive days.
Similar to my experience with the NP001 phase 2 trial, I got drowsy with each infusion, with mild dizziness. This was similar to my first infusion week with NP001, building on consecutive days and lasting over 24 hours for the last infusion. It may have been worse than for NP001. Slept most of day following last infusion.
As with NP001, fasciculations increased in intensity and frequency immediately.
Monitored BP and heart rate. No issues.
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