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My Year on Biotin

If you’ve read this blog, you know the drill. I have an incurable disease. Cause unknown. There is no treatment. Fifteen years in, I require a power wheelchair to get around, and I’m completely dependent on others, yada yada yada.

Despite the fact that there are no FDA-approved treatments for primary progressive multiple sclerosis, I can’t help but experiment. Here’s what I’ve tried so far:

Novantrone (2001 – 2002): Intravenous infusion. A cancer treatment with potentially dangerous cardiac side effects. Used for one year. Didn’t help.

Copaxone (2002): A painful, daily, self-injection. Used for six months. Didn’t help.

Oral Methotrexate (2002 – 2003): A pill. Used for one year. Didn’t help.

Low Dose Naltrexone (2004): A pill. Used for three weeks. Felt worse, not better.

Rituxan (2005 – 2009): IV infusion. Worked well for the first year. Worked less well for second. Didn’t work for third or fourth year.

CCSVI treatment (2010, 2011): Procedure similar to balloon angioplasty. Had one in 2010 and another in 2011. Neither helped.

Intrathecal Methotrexate (2012 – 2015): Spinal tap injections. Used for two years. Worked for the first year. Didn’t work for the second year.

In early 2015 a drug called Biotin burst onto the scene. Specifically, high doses of Biotin showed effectiveness in early trials for primary and secondary progressive MS, forms of the disease that have no FDA-approved treatments. In April of last year, I found a compounding pharmacy to provide me with 100 mg capsules. I’ve been taking three a day. You can read my other Biotin posts here. Having completed one year of treatment, this is my conclusion:

Biotin (2015 – ): A pill. Used for one year. Didn’t help.

This year I’ve noticed disease progression primarily in my hands. A couple of years ago I thought my left hand was essentially useless. Today, that’s where my right hand is, and it’s my good one. My left hand sits in my lap all day long, contributing almost nothing to my existence.

Biotin research continues, but I have a sneaking suspicion it’s not going to be the answer we had hoped for. At this point – one year without success – I would normally terminate a treatment. I’m not quitting Biotin right now, however. There’s nothing else to try, and treatment seems harmless. I’ll continue for a while in the hope that it takes more than a year for this drug to kick in, as unlikely as that seems.

Or, I may stop at any moment. I don’t know. I just don’t know.

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A Few Items…

Apple Watch Update


Last week I wrote about my Apple Watch. The only complaint I had was that I couldn’t use Siri, hands-free, to call 911. When I tried, the watch gave me a message indicating that I needed to complete the operation from my iPhone. What if I fall and I can’t reach my iPhone?

I had a long chat session with Apple technical support. I wore out two levels of technicians before I found myself with Melanie, a Senior Advisor. At the end of our chat conversation, she said that she would need to speak with the software engineers to determine if I was doing something wrong, or if this feature simply wasn’t supported.

She called me a couple of days later and said, “It’s not supported.”

I already had one workaround in place (see my previous post), and she gave me a second workaround. By making a contact called “HELP,” and making that contact a favorite, and giving the contact a phone number of 911, I can place a call to 911 from my watch with a couple of button pushes. I just can’t do it completely hands-free.

But the best news is, Apple now realizes that hands-free, voice calling for 911, is a desirable feature for the Apple Watch, and they will try to add it to a future software revision. We shall see.

Oh, and more good news. They read last week’s blog post, and liked it so much they passed it around inside Apple.

Book Title and Cover Design

I have decided on a title for my book, and a basic cover design. I understand that if I work with a publisher they may want to change that, but I like the idea of coming in with a solid idea. One of Kim’s sixth grade students sketched it for me, and I showed it to 15 or 20 folks. I got about 80% positive feedback. My niece Erin, who is an art education major in college, is working up another version for me. As soon as she’s done, I’ll share it here.

Who came up with the idea? Who gets the free lobster dinner? Me, at least I think so. I thought of the title and the cover design in the middle the night a couple weeks ago. But sometimes I think I have an original idea, when it was actually whispered in my ear by somebody else. So, if in fact it turns out that one of you did give me this idea, or something very close to it, I’ll gladly give you all the credit, and the lobster dinner.

Biotin

I’m a little over six weeks in, and I’ve noticed no changes yet. It’s still very early, and I am by no means discouraged. I’ll keep plugging away and update you every now and then.