Diagnosis X

   The neurologist said he had suspected a serious neurological disorder.  Though he didn't specify at the time, he most likely thought it might be ALS.  But the progression of symptoms and lab tests did not bear this out.  Fortunately.  Obviously a motor neuron disorder, but not that one.
    Based on my research, which of course is googled, I would suspect PLS.
    Primary lateral sclerosis "affects the upper motor  neurons of the arms, legs, and face.  It occurs when specific nerve cells in  the motor  regions of the cerebral cortex gradually degenerate, causing the movements to be slow and effortful.  The disorder often affects the legs first....When affected, the legs and arms become stiff, clumsy, slow and weak, leading to an inability to walk or carry out tasks requiring fine hand coordination.  Difficulty with balance may lead to falls....Affected individuals commonly experience ...an overactive startle response.  The cause is unknown.  The symptoms progress gradually over years...PLS is sometimes considered a variant of ALS, but the major difference is the sparing of lower motor neurons, the slow rate of disease progression, and normal lifespan.  Most neurologists follow  the affected individual's clinical course for at  least 3 to 4 years before making a diagnosis of PLS.   The disorder is not fatal but may affect quality of life."
     The second sentence above may be why none of the many doctors and specialists have come forth with a diagnosis, other than to agree that neuropathy is present.
     Of the hundreds of causes of  neuropathy and the many forms of  neuron motor diseases, PLS may be one of the most benign, but it's no picnic.