Health Update

Despite my original intent to post only a single entry about my health, I've posted several and am about to post another. I have reconnected with several old friends because of these posts. I've received many expressions of concern. Thank you all!

Here's my latest update. I went to The Myositis Center at Johns Hopkins both in January and May. During the January visit, the rheumatologist ruled out polymyositis. Initially, she thought my muscle MRIs definitely confirmed some form of myositis; there was clear evidence that the muscle in the back of my thighs had been damaged and replaced with adipose tissue. My thighs looked like well-marbled steaks. However, there was no other confirmation of polymyositis. She also decided that I had a neurological disorder primarily. She still thought inclusion-body myositis, which is untreatable as well as incurable, was a possibility.

That very same day, she got a consult from her partner, a neurologist. He gave me the most extensive neurological review I had had to that point. He seemed to be fascinated, especially, by my lack of sensation in my feet and in patches of my legs, arms, and hands. He also demonstrated, through his tests, that I had lost any sense of balance. With my eyes closed, I could not tell whether he was moving my big toe up or down, or at all. Neither could I tell whether I was standing or falling. We scheduled a follow-up neurological appointment for May.

I had loads of tests leading up to the appointment: spine and brain MRIs, a lumbar puncture (i.e., spinal tap), blood tests, and a skin biopsy in which they counted my sensory nerve fibers. I fully expected that the emphasis of the appointment would again be on the problem with my sensory nerves. Instead, the neurologist focused exclusively on my motor nerves. (I had somehow put on a bunch of muscle mass on my legs between January and May.) He decided there was nothing mechanical that should prevent normal movement. He did not arrive at any definitive diagnosis. He believes I have an upper motor neuron disorder, either Primary Lateral Sclerosis (a less severe form of Lou Gehrig's disease, though very, very rare) or Parkinson Plus Syndrome. He stated, however, that this would be inconsistent with my positive reaction to steroids. The most definitive statement in his clinical notes was that he had ruled out any reversible, treatable, or curable lower motor neuron, muscle, nerve, or neuromuscular disorder. An upper motor neuron disorder is untreatable (apart from symptoms) by definition.

I do not agree at all with this semi-diagnosis. Corticosteroids saved me. Without them I was not able to get in and out of bed, dress myself, etc. That was completely reversed within days as soon as I was put on the steroids. As I try to taper off the steroids (because of their terribly destructive side effects) I am beginning to experience that pain and helplessness again. I also believe that much of the loss of coordination the neurologist observed was due to loss of sensation rather than a movement disorder. It's hard to pick thinks up when you have no sensation in your fingertips!

Anyway, at this point it seems as though we've exhausted all our alternatives. I will continue to try to get off the steroids, and try to get some of the orthopedic issues with my spine taken care of (I now have two compression fractures). Otherwise, there's nothing for it except to wait.