(f+s)ALS therapy??

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jethro

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Joined
Nov 2, 2017
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457
Reason
PALS
Diagnosis
09/2017
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HR
State
Croatia
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ZAGREB
i described my problems in a post before, so i'm spread all over my "new" friend - gluckie (i call him debbie2).
i rewind my film - onset was at the same time, got somehow history of diabetesT2 in familly,
decided to take glycophage/metformin, bought yesterday,
by chance typed in youtube "metformin als" (everything i do/type i add als) and found:
just 454 views? since published (9 mnths)???by 5.5.21.



if so, ALS is a (just) condition, not disease
"motor neurons, which die, did not die".
again: mnd is not acronim for motor neuron DEATH, but DISEASE
i found this:
 
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The preclinical for this was that metformin delayed onset in c9 mice No one even knows that this is particularly helpful in c9 PALS let alone others. Slowing or delaying something doesn’t mean it isn’t a disease but if you want you can call ALS a condition

anecdotally I have heard PALS in the trial say it doesn’t seem to help as well as c9 PALS who developed ALS while taking it. I tried to take it but it makes me sick
 
when, how long and how many grams did you take/day?
i'll start as soon as i get it.
 
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I started at 250 and couldn’t take it. The extended release which comes in 500 to start I managed for 2 weeks. The goal dose was 2 grams a day divided which is what they study people took.
 
trial is 6 months. just few drugs (i.e. antibiotics) can do something under 3 months. als is a condition which occured long before you can notice it. problem is that it has a spiral path, so when you're diagnozed, you'r 3/4 "there".
pals should be patient like crocodile. unfortunatelly, not everyone has that privilegy.
 
My husband (SALS) was on daily metformin years before he developed ALS.

Just to be sure, you are taking Glucophage OR metformin, right? One is a brand, the other the generic.
 
@igelb thanks laurie, this is very prescious info. there are many questions i have to ask. did you write about it? have no energy to investigate your 9700 posts... metformin or glukoxyz...? it is generic, don't know a name. today ill start with 500mg/day, today ill check my hba1c.
 
If it is generic, it's metformin. The 2x/daily form may control glucose better than the 1x daily one.

My husband was diabetic pre-ALS as others have been -- don't think I've written anything else but feel to post or PM anything else I can answer. For any PALS that is diabetic, it is worth noting that at different stages of ALS, based on diet, exercise and weight, glucose control may wax and wane, suggesting adjustments of meds like metformin.
 
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