Vitamins/Supplements

[KimT]

I've done some research on supplements and vitamins. Can you tell me what you take, how much, and if you think it has helped? I've read very differing opinions on arginine versus lysine, even in food. If someone who has some experience can shed some light on this it would be much appreciated.

Thank you,
Kim

 

[affected]

Kim, you are not diagnosed with ALS, you should confine your posts to the DIHALS section.

 

[laurel]

I think one of the most promising vitamins is B12, but it has to be methylcobalamin and has to be taken sublingual(dissolve under the tongue) and high doses are needed for neuromuscular diseases. Minimally 20 mg daily. So if you buy it at a place like Costco, the largest dose tablets will be 5000 mcg (that is microgram). So one would need 4 tablets under the tongue daily. We are having some positive effect with this for my husband who has atrophy and wasting of his right hand and forearm and right foot drop from CIDP. He is taking 40mg. Lots of good studies out there supporting this form of Vitamin B12 making reference to stopping muscle wasting. Cannot be cyclobalamin though--has to be methylcobalamin. Taking large quantities can't hurt you as you just pee out the excess. Read about it before taking, and it always is best to run it by your physician before starting something new.

 

[laurel]

I just wanted to say that the methylbalamin doesn't purport to be a cure, but it is showing promise at slowing wasting down. That is why my husband is using it i.e. to slow his wasting that happens with some motor variants of CIDP like the one he has. Slow is good in our books.

 

[KimT]

Thanks! I've been taking sublingual Methylcobalamin B-12 for a long time but only 5000 mcg. My blood level B-12 is always very high but last blood test it dropped (still high but not like it usually is.)
Sorry I posted this question here but thanks.

 

[canmark]

I take a one-a-day multivitamin (and Rilutek) and that’s it.

 

[MaxEidswick]

Centrum Silver Men 50+ TAB 1 per day by mouth Over the counter multi-vitamin 10/1/2013
Vitamin C 1000mg CAP 1 x per day ALS 10/1/2013
Vitamin E 1000 IU CAP 1 x per day ALS 10/1/2013
Vitamin D3 2000 IU CAP 1 x per day ALS 10/1/2013
L-Serine 500 mg Tab 1 x per day ALS 6/15/2014
Folic Acid 800 mcg (0.8 mg) TAB 1 x per day ALS 10/1/2013

 

[Music67]

Has vitamin B12 with methylcobalamin shown to reduce fasciculations?

 

[gooseberry]

B vitamins help with neurotransmitter function. Not sure of the exact mechanism

 

[Graybeard]

Just this morning I ran across this thread. Just had my first tab from Costco. I already get 200% B12 in my Boost Plus, though I don't know which kind it is. Sure wish something would help my breathing.

 

[gooseberry]

Ahh Graybeard, for you and Steve both.