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ALS Worldwide welcomes any questions or comments you might have.  We provide free, personalized and confidential support services to anyone in the ALS community—whether you are a patient or a loved one, friend, health care professional or caregiver of someone diagnosed.

Get help now! Fill out the Online Profile Form or if you would prefer to talk with someone by email or phone first, please contact us at [email protected] or 1-608-663-0920.

For all other inquiries, please use the email form to the right and we will respond promptly to your request.Thank you.

ALS Worldwide
5808 Dawley Drive
Fitchburg, WI 53711‑7209

ALS Worldwide
February 03, 2016

About Methyl B12

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"I learned about ALS Worldwide through a Chinese American friend who gave me their contact information and website address. I set up a Skype session and one of the first treatments ALS Worldwide recommended was daily high dosage Methylcobalamin (Vitamin B12) intramuscular injections.

I have been taking the shots for the past year and I believe they have clearly slowed down the progression of my disease. I began to tell other Chinese patients about Methylcobalamin, and those that have tried it have expereinced the same positive outcome.

Together, we organized the ALS Worldwide WeChat group. At present, there are 15 volunteers and 200 patients in our group. I help coordinate the needs of patients with the help of other interpreters and translators. Through videoconference, we are able to communicate regularly with the caring people at ALS Worldwide, who have now helped hundreds of Chinese patients access Methylcobalamin and other helpful treatments.

So many people want to get help through ALS Worldwide because there is no resource like it for us here. ALS Worldwide has become rooted in China and is flowering like a beautiful tree."

Emerson Z
Shenzhen, China


Positive Clinical Trial Results Presented at the 2015 Annual Meeting of the American Academy of Neurology ​and at the 26th International Symposium on ALS/MND

ALS Worldwide has recommended and supported the use of high dosage methylcobalamin (vitamin B12) delivered through daily intramuscular injections for the past eight years. During that time, more than 2500 ALS/MND patients in the US and other countries have benefited from the use of this treatment. A recently concluded trial study confirms that, "The present study demonstrated for the first time that ultra-high dose methylcobalamin can significantly prolong survival and retard progression in ALS if administered early and via injection".

As discussed in Neurology, the multi-year phase 3 clinical trial (NCT00444613) demonstrated for the first time that ultra-high dose methylcobalamin can significantly prolong survival and retard progression in ALS if administered early. At the 2015 Annual Meeting of the American Academy of Neurology (AAN), Ryuji Kaji MD, Department of Neurology, Institute of Health-Bioscience, Tokushima University, Tokushima, Japan reported that human subjects in the 50-mg group experienced prolongation of survival by more than 600 days compared with placebo. These efficacious findiings were also presented during the poster presentations for the 26th International Symposium on ALS/MND in 2015. Since then, ALS Worldwide has received multiple requests from leading neurologists and physicians from around the globe who want to help their patients acquire and use high dosage methylcobalamin delivered through daily intramuscular injections. 

Patients should ask their medical practitioner for access to high dosage methylcobalamin daily injections, available through compounding pharmacies. For further assistance, please email [email protected].

The Specifics about Methycobalamin

Methylcobalamin is a liquid form of vitamin B12. As an intramuscular injectable, patients and careivers have consistently reported to us that it provides energy and muscle strength and reduces limb weakness and atrophy in ALS. We first became aware of this supplement several years ago.  This supplement has been the focus of ongoing clinical trials in Japan for over 20 years. In the mid-1990's, the University of Kyoto in Japan conducted an impressive study on the use of high dosage liquid methylcobalamin, using rats as subjects. That study was followed by a small but carefully controlled and monitored human study, in which similar results were obtained.  These successful studies on rats and a small group of human subjects led Eisai Co., Ltd, Pharmaceutical to conduct a larger in-depth study of ALS patients in 2007 through the University of Tokushima. The latter study proved even more efficacious for patients and has been foundational to ALS Worldwide's recommendation of high dosage injectable methylcobalamin since 2008.

To view the abstracts of both studies, please refer to the following links: 

http://www.ncbi.nlm.nih.gov/pubmed/8021696  

http://www.ncbi.nlm.nih.gov/pubmed/17969354

Although the lifetime of the injectable is short-lived, requiring daily injections, hundreds of patients have found methylcobalamin beneficial. It is by no means a cure, but methylcobalamin has improved daily quality of life for many persons with ALS.

Because many ALS patients have tried oral, sublingual or low dosage injectable Vitamin B12 without noticeable impact, it is important to follow several guidelines when using this supplement. Patients should procure methylcobalamin, not cyanocobalamin or hydroxycobalamin (earlier, less effective, versions of B12) and adhere to a daily, injectable dose of 25 mg. Over the counter B12 pills, which have no effect, should be avoided. Try not to jump to conclusions if you don’t notice positive effects immediately; methylcobalamin must be used over a test period of one to three months before its efficacy can be accurately determined.

Methylcobalamin B12 requires a physician’s prescription. It can only be obtained from a compounding pharmacy. One such pharmacy is Hopewell Pharmaceutical, in Hopewell, NJ. 

  • The prescription information includes the following:
    • 25 mg/1mL
    • pH 2.7-3.0
    • Number of months should be at least one, in order to sufficiently assess the efficacy of the treatment, but generally no more than three, in order to maintain potency.

Please discuss this and any other recommendations with either a primary care physician or neurologist to determine whether Methylcobalamin B12 is appropriate for you. When using injectable methylcobalamin, avoid alcohol and smoking.  If antibiotics are needed, methylcobalamin should be temporarily discontinued.

For more information/instructions on how to use Methylcobalamin, visit our instruction page.

If you or your physician have any questions please email us at [email protected]