Anecdotal temporary ALS reversal

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Aaronmandevill

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Just wanted to share my temporary reversal. I’ve already been in contact with Dr. Bedlack and sent him all the supporting information.

Initially I noticed facial weakness, could not perform seal with lips, spilled water from mouth when drinking. I also noticed cramping in both feet with weakness starting in my left foot. The toes progressed over 2 weeks where they moved only slightly and would not move at all against pressure. I also noticed an increased difficulty in swallowing solid foods and in speaking.

On May 21 I donated blood after reading about iron chelation trials and my ferritin being high (360). Later that afternoon I noticed my speaking went back to being perfectly clear. My swallowing went back to normal. I tested my toes and they had returned to full strength. 9 days later I noticed one toe was beginning to get weak again and swallowing started to feel a bit difficult. On May 31 I donated blood and once again all my symptoms went away, this time with fasciculations all stopping.

Unfortunately combined with curcumin usage my body quickly lost all its iron stores and I became anemic after 4 donations. So now I am back to regular progression leading to my diagnosis this week.

Just wanted to share this in case it ends up helping with research in some way down the line.
 
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Did they also do a Ferritin level and rule out hemochromatosis? That sounds pretty strange, especially since it happened more than once
 
My ferritin was 360. It was elevated from tons of transfusions during cancer treatment. Or so they say. Didn’t monitor it for 5 years after the treatment, some studies say ferritin is high in more aggressive forms of als. My serum iron was low(17) even when ferritin was 360.
 
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What was your total iron binding capacity?
 
At that time (May 14) TIBC was 225 ug/dL.
Iron % Saturation was 8%
And ferritin was 360

This week I’m:
Ferritin: 28
Iron, Total: 76
TIBC: 367
Iron % Saturation: 21
 
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