Symptoms and Diagnosis

I was diagnosed with ALS on January 30, 2009.  A lot of people with ALS have their exact diagnosis date imprinted in memory.  It was a Friday afternoon, and I’ve wondered since then if the doctor scheduled it that way purposely; the news was such a shock that I can’t imagine going back to work as if it was just carpal tunnel syndrome.  

That’s what I thought it was when I first noticed that I had trouble gripping my toothbrush back in February 2008. My chiropractor worked on it for a few weeks with little result, then I got busy, stopped going, and ignored it.  Before I knew it, it was fall. All that time, I was aware that an acquaintance at our American Legion was having increasing physical challenges and he couldn’t get an answer to the cause. I bet you can guess what it turned out to be.  But in the fall of 2008, all he knew was that his one ankle had become so weak that he had to wear a special brace and use a cane. His wife confided to me that she had been afraid that it was Parkinson’s, but thankfully that had been ruled out.  She described some other symptoms that were similar with me, and said their chiropractor was having some success. By this time my other hand was getting weak, so her story inspired me to try a different chiropractor. The visit didn’t turn out as hoped.  When he heard my symptoms, he refused to work on me until I went to a neurologist. Apparently, because by then it was bilateral – affecting both hands – it pointed to something more than a misaligned spine. In fact, he mentioned the possibility of Multiple Sclerosis, which took my breath away.  Later I had the awful thought, why couldn’t it have just been MS?

The diagnosis process was relatively quick, especially considering how long it took for our American Legion friend.  I saw a neurologist in November, had blood tests and an MRI in December to eliminate other possibilities, then in January had an Electromyogram (EMG) and Nerve Conduction test.  I think that the doctor doing the test knew it was ALS by the end (it takes hours to do the whole body), but she said she had to review the data and report to the referring neurologist.  I was so wiped out by the procedure, and so dreading the answer, that I didn’t press her to speculate.

Although the early symptoms and diagnosis process for ALS can be very different from one person to the next, the conversation with the doctor seems depressingly similar for everyone.  On the 30th, while I was still in stunned silence, my sweetheart of 15 years told the doctor that we were familiar with Lou Gehrig’s story, but surely treatment had advanced in the 70 years since then?  No. After a few more questions with hopeless answers, there wasn’t anything left to discuss. Except for the big question neither of us would say out loud: how long? I’m glad we didn’t. Soon enough we read the conventional wisdom of 2-5 years, but pretty quickly I was determined to be an exception to that.  I never asked any doctor; I figured if they don’t know what causes it, then they can’t know much of anything for sure.

The date of an ALS diagnosis is an event that divides memories into “life before ALS” and “life after.”  One fifth of my life is now “life after” memories. This is the first day of an unknown number of years more, just like it is for you.