I first noticed some weakness in my right hand around the first of the year. As time progressed, the weakness became more pronounced, and my fingers began to curl up into a loose claw. There was no pain, no numbness, just gradually increasing weakness and lack of coordination. What in the world was happening?
With that question I began nine months of blood tests, X-rays, MRIs, specialists, physical therapy, diagnoses, mis-diagnoses, research and guesswork.
Because I already have osteoarthritis, we first checked for a pinched nerve in my neck. Bone spurs, nerve pressure, yeah, I got 'em -- but nothing, said the neurosurgeon, that could be causing my symptoms. Next, a neurologist diagnosed a small isolated stroke, even though no signs of stroke were evident on the MRIs ("Very small stroke, very small..."). PT was prescribed, which, aside from introducing me to the sublime comfort of a paraffin bath, did nothing.
My symptoms kept getting worse.
Perhaps it was some form of autoimmune disease. (What form? I dunno.) Tests showed not.
Perhaps it was something bizarre like Dupuytren's contracture (no) or something common like carpal tunnel syndrome (no).
While all these tests, treatments and referrals were going on, I was doing some research of my own. The more things we eliminated, and the more my symptoms kept increasing (add fasciculations, or frequent, localized little muscle blips -- like mini-shocks), the more I was led toward one possibility.
So that when, eventually, I went to another neurologist, then a third, then went through EMG testing and nerve conduction studies, I sort of knew what was coming. I expected the diagnosis of ALS -- and I got it.
That doesn't mean hearing the official diagnosis was easy. It doesn't even mean I was prepared, not really, not fully. It means, more than anything, that what I most feared came true.
But silver linings, however tarnished, exist: I am lucky to have been referred for final testing & diagnosis to Dr. Jon Katz at the Forbes Norris MDA/ALS research Center in San Francisco. Dr. Katz is empathetic, positive, thorough and attentive. The center works on a "team" approach with highly individualized treatment. The 2 1/2-hr drive is well worth it.
And the greatest silver lining of all is the one that shines every day of my life: the support, understanding and love of my husband, Scott. We'll be afraid together, and face changes together, and be strong together - and run until tackled.
