supplements that may help

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nebrhahe53

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Joined
Jun 13, 2014
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1,017
Reason
PALS
Diagnosis
06/2014
Country
US
State
Tx
City
Austin
Given that the medical profession can offer nothing, not even trials, what supplements have you been taking that seem to help, or at least slow things down, I have heard of magnesium, zinc and coconut oil. Also delsym for bulbar-contains dextromethorphan-the active ingredient in Nudexta.
Anything else?
 
I think a lot of us take acetyl l carnitine
I personally take that, b complex, coq10, tumeric and vitamin e. The e is very controversial but my neuro believes it is worth a try. Increases cancer and cardiovascular risk and no hard evidence for it.
I am waiting on blood work for inosine copper and zinc. Inosine increases uric acid PALS do better with a uric acid on the higher side or normal. I am looking at the als tdi copper zinc thing. Before this There has been a formal trial of copper 2 mg and zinc 90. The theory is that you need more zinc to bind glutamate because the ALS has produced a biochemical reaction that sends something else that will bind to your zinc leaving the glutamate free which is bad. The question is whether copper is needed to balance zinc can make you copper deficient and copper deficiency actually gives ALS like symptoms. If you have too much copper of course then you do not need to supplement
I am not doing the l serine because I am familial and my issues are different. I might have looked at it if I were SALS though. Obviously you have to continue to do your own research and decide
 
>what supplements have you been taking that seem to help,


Low Dose Aspirin 81mg TAB 1 per day by mouth Hypertension 10/31/12
Allopurinol 150mg TAB 1 per day by mouth Gout
Riluzole 50mg TAB 1 tablet by mouth every 12 hours ALS 9/17/13
Baclofen 20mg TAB 1 tablet by mouth twice daily Muscle cramping 9/1/13
Glycopyrrolate 1mg TAB 1 tablet by mouth every 6 hours as needed Secretions (excessive saliva) 9/1/13
Sertraline 50mg TAB 1 tablet by mouth every day Anxiety 4/16/14 4/25/14
Centrum Silver Men 50+ TAB 1 per day by mouth Over the counter multi-vitamin
Vitamin C 1000mg CAP 2 x per day ALS 10/1/13
Vitamin E 1000 IU CAP 2 x per day ALS 10/1/13
Vitamin D3 2000 IU CAP 1 x per day ALS 10/1/13
Folic Acid 800 mcg (0.8 mg) TAB 2 x per day ALS 10/1/13
Dexilant 60 mg CAP 1 per day by mouth ALS 1/13/14
Tussin 30 ml Liquid 3 x per day ALS 1/13/14 1/20/14
Mucinex 1200 mg TAB 2 x per day ALS 1/13/14
Indomethacin 50 mg CAP 1 capsule 3 times daily with food as needed Acute gout attack
 
What is the theory behind the dexilant for ALS Max? This is new to me
 
Riluzole - 1 50mg daily (had to drop dosage due to elevated liver enzymes)
CoQ 10
Magnesium
Turmeric
Coconut oil in coffee, cooking, and on skin occasionally

I think the best things I do are:
aerobics in the pool for one hour daily.
See a PT who understands ALS for stretching weekly.
Light weights that I can do 3 sets of 10 without feeling any pain or soreness the next day, these were all recommended by my Dr at the ALS clinic and things I enjoy as well

-kay
 
Max, I also wondered what the dexilent and tussin were for. I assume the mucinex is for phlegm? Az whats the idea behind turmeric?
 
>What is the theory behind the dexilant for ALS Max? This is new to me
>Max, I also wondered what the dexilent and tussin were for. I assume the mucinex is for phlegm? Az whats the idea behind turmeric?

no idea, I'll ask Sandy :)
 
coconut oil and B12
 
>no idea, I'll ask Sandy

we don't know :-(

Dexilant (dexlansoprazole) is used to treat certain stomach and esophagus problems (such as acid reflux). It relieves symptoms such as heartburn, difficulty swallowing, and persistent cough. Dexilant belongs to a class of drugs called proton pump inhibitors (PPIs).
 
Thanks Max. If you ever find out let us know!
 
turmeric appears to relieve cramping or lessen them. I take a tablespoon of yellow mustard morning and night and although this is purely anecdotal, my cramping has greatly reduced. I asked the docs at Lou Gehrig/Columbia Presbyterian about it and they said "for some reason in some people...".
 
>Thanks Max. If you ever find out let us know!

will do! I will say that since Sandy has been pumping me full of the vitamins I have no gotten sick despite being exposed ....
 
nikki...saw you said there has been a drug trial for copper...recently read an Oregon university announced a possible break through using copper... wonder what the difference is or data is not shared...I THINK turmeric or cu cumin is for fighting inflammation
 
Hi Pearshoot!
I have seen that copper info too. The focus is different as the one I spoke of was really for the zinc as a binding agent. I do not think results are reported yet.
Yes I take turmeric for its anti inflammatory action Was interested that it helps cramps. Did not know that!
 
One link to the OSU copper research is here. This reads that it is related to the SOD1 gene, which if I follow correctly means fALS.
 
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