B-12 Study

[BlueandGold]

Bob,

There is an abstract paper on the results of the Japan Study. You can find it on the ALS Association site. Only my opinion, however the study was done in another country. I don't think the US is very responsive to other studies they did not participate in. Additionally, many people who have tried b12 in the US are usually given the Cyanocobalamin. My neurologist did not even study the trial enough to know that it specifically stated NOT to give Cyanocobalamin but it had to be Methylcobalamin.

There are many who genuinely care about this disease and want to find potential treatments. However it is just as real that if there is no money to be made from the treatment (and I'm talking about billions) there won't be much public outcry about alternative treatments, such as the b12. Seems if it isn't manufactured by a drug company, there is little interest in the medical field about it.

Vince

 

[karlos789]

What do you think about Inosine? Does it worth trying i.e. buying OTC?

 

[Nikki J]

From ALS untangled
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The link seems to work in spite of the title. Let me know if it does not for you

 

[karlos789]

Your link works

 

[chally]

hey vince,can't git VA to ok the methaycolbalimin,so they git me the other stuff cynocolbalimin in pill form which i take but might stop as i don't know if i am gitting any thing out of it. also VA agree to send me to Duke for 2nd opinion so i am waiting for the paper work to move through the pipe line . thanks chally

 

[BlueandGold]

Chally,
Don't take the Cyanocobalamin. Wait till you get your appointment with Duke. My guess is they will give you the scrip for methylcobalamin. I'll let you know when my appointment is confirmed. Hoping for early September.

Vince

 

[Bob R]

I have found the results of the clinical trials for B 12 from Japan.

Story: Eisai Asks Japan Regulatory Agency to Approve ALS Treatment | ALS Therapy Development Institute

Apparently, twice weekly 25 mg IM injections of methylcobalamin are beneficial in slowing the degeneration of muscles, if the routine is started within 12 months of onset. The company, Eisai Ltd, is asking for Japan's version of FDA approval. Personally, I'm not waiting for that.

ALSworldwide.org however, recommends 25 mg IM injections daily. They also claim positive benefits. So, my first question is: should the dosage be daily, or twice a week ?

Methylcobalamin B12 | ALS Worldwide

I also read, I can't remember where, that 40 mg of methylcobalamin sub lingual, is acceptable in lieu of IM injections. My second question then is: is this correct and acceptable ? I have been taking 40 mg sub lingual per day since Jul 16. This product is readily available without prescription and costs about $ 75 per month. I intend to e-mail these two questions to Robert Goldstein at ALS.net and see if he has answers.

BTW, I asked my first neurologist about this and he had no idea what I was talking about. He also has no knowledge of any alternative therapies. It's sad to think I know more about ALS than he does. I guess he just picks up his pay check and goes home and plays golf.

 

[Atsugi]

The chief VA pharmacist at your VA clinic is authorized to provide you any medication that your VA doc can justify. You may need to give it a little push.

 

[Maboss]

Dear Blue&Gold,

Any news since you started these injections?
My mothers just started 2 injections of methylcobalamin/week two weeks ago and is very tired the day after. Do you feel the same?

Any other experiences?

Thanks a lot, see you, Marlène

 

[scaredwifetx]

ok...please help. My husband's first neurologist (one who did the blood tests and first electromyogram/nerve conduction study) also did the blood tests. He was the first doctor to diagnose Steve's ALS due to the electromyogram/nerve conduction study and other symptoms. Steve also had a vitamin B14 deficiency, critical high CK kinase and high methylmalonic acid. He referred us the Texas Neurology for second opinion but also prescribed NASCOBAL spray 500 msc once per week. After reading this ,I went and looked at the box and it is the Cyanocobalamin form. My question is in the previous posts you are saying not to take the Cyanocobalamin. My husband has been taking this once per week for his deficiency. When we spoke to who is now our ALS Neuro, we asked if he should still be taking it and she said " yes it can't hurt. Now I am freaked out. Please tell me why he should not be taking this form and if I need to email the clinic tomorrow and stop using it. We do not want to take anything that could make things go faster or cause anymore issues than what we already have to deal with. Now I am worried.

 

[BlueandGold]

From what I've read, the Cyanocobalamin contains cyanide. ALL docs will tell you that the amounts are too small to harm you. However, that ingredient must be filtered out by your body and for ALS patients, we don't need our bodies having to work harder trying to absorb the b12. The methylcobalamin is readily absorbable by our bodies, no filtering process. Nearly all compounding pharmacies can make the methyl for you but most docs aren't aware of it. My doc, head of the ALS clinic in WV said it wasn't available in the U.S. Unfortunately we often have to educate our physicians. Best of luck to you. Remember to stand your ground, whatever treatment you are looking for. There are docs who give up without trying.

Vince

 

[BlueandGold]

Sent a reply but it went to mod for review. Simply put it is harder for our bodies to absorb the Cyanocobalamin versus the methylcobalamin. Demand the methyl, any compounding pharmacy can make it.

Vince

 

[GregK]

I believe that it simply was that the methylcobalamin is more effective FOR THIS STUDY than the cyanocobalamin:

Patients should procure methylcobalamin, not cyanocobalamin or hydroxycobalamin (earlier, less effective, versions of B12)

The above is a quote from here: http://alsworldwide.org/care-and-support/article/methylcobalamin-b12

Chill! 8^)

 

[scaredwifetx]

Thanks Greg. Was worried we were taking something that would make it worse.

 

[Bob R]

I've been taking 40 mg b-12 methylcobalamin sub linguals daily for about 6 weeks now. It's a very short time,but I don't seem to be any worse. My GP says sub linguals might lose a little potency, but not too much. And they're cheaper and easier to take than injections. I must also say that I am using the shot gun approach. I have 15 or so supplements that I take daily.