ALS Awareness Month: Self-Advocacy Pt 1, Methyl-B12

See that vial in the picture? That’s a form of vitamin B12 called methylcobalamin, and I just started injecting it this week. Why? Well, here’s a quote from ALS Worldwide, a patient advocacy site out of the US:

“…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 findings 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.”

Note what I’ve highlighted in the paragraph above:

1. if administered early-I’ve just reached the threshold of what might be considered early, as I’ve had symptoms for less than 2 years.

2. more than 600 days-the number of extra days of survival the subjects in the Japanese test group experienced. 600 days, that’s almost 2 years. The only currently available drug for ALS, Riluzole, may increase life span on average 2-3 months. Let that sink in. That’s 60-90 DAYS. I tried Riluzole, and the side effects were horrid, it wasn’t worth it to me.

3. 2015-that’s when the Japanese team presented its findings in an international symposium, although ALS Worldwide has actually been recommending it for longer. This is not something brand new.

So, here’s a high dosage of a vitamin that’s water soluble (excess is excreted in urine), no side effects of which I am aware, highly recommended for early onset, and has been around a number of years.

You know how I found out about it?

Not through my diagnosing neurologist.
Not through the ALS specialist at the clinic in Vancouver.

I found out about from researching, from joining numerous on-line forums, by sifting the wheat from the chaff that is the glut of online information. I found out about it myself.
It’s expensive, and the only compounding pharmacy in Victoria that makes it can’t get it stable in the concentration required, so I got it via an American pharmacy (add it to the expense column).

I don’t know if it will work for me, but I certainly am going to try it. It just would’ve been nice to have had the option discussed by a health care provider, you know?

Think about this: if you are diagnosed with cancer, what’s the first thing your doctor likely does? Sends you to an oncologist, who discusses options with you. Even if you’re terminal, the doctor will talk about options for quality of life, treating symptoms, keeping you going.

When I was diagnosed with ALS? The ALS specialist in effect, sent me home to die. She didn’t mention Riluzole, I brought it up. She seemed shocked when I asked her about the remote possibility of multifocal motor neuropathy (a mimic disease), just saying no, without explaining why (my own reading provided me that answer). She didn’t recommend that I come back to the clinic for anything; in fact, I wouldn’t even have know about the BC ALS society as quickly as I did were it not for a family friend in Newfoundland reaching out to me.

Not that my healthcare experience was poor, I had fantastic service from the time of first symptom to diagnosis; a multitude of tests covering almost every possibility, answers in a relatively fast time, plenty of second and third specialists brought for examination…it was after the diagnosis that everything came to a complete stop and I was, essentially, hung out to dry.

I’ve found out so much information since that could have, should have, been provided. All kinds of ways to improve quality of life, to stay connected, to truly live. And all starting with my own research.

I hope with all my heart that none of my readers who do not have this horrible disease ever need this information, but please take away this: the doctor may be right, but it doesn’t mean they know everything, or anything. Be your own advocate. You just might save your own life.