Lower motor neuron disease

I am 56.  In 01/2010 started noticing inability to walk a straight line and a bit of a foot drop.  Mentioned it to my PCP on an annual physical in 03/2010, didn't think much about it.  Called him 04/2010 complaining that the weakness was becoming worse, unable to stand on the ball of my foot, unable to heel stand, with what was quickly becoming a severe hyperextension of that knee.  PCP sent me to a neurologist who ordered an EMG (normal) and an MRI of the lumbar and thoracic spine which showed significant abnormalities in T3 through T8 and also L5-S1.  At no time was I or am in any pain whatsoever.  The neurologist suggested I have a full-body CT scan of the chest, abdomen and pelvis, which I refused.  Neurologist could not interpret the findings on the MRI.  Called my primary back, who sent me to a rheumatologist, who did a huge battery of tests (all normal).  She also could not interpret the findings on the MRI and said that I needed to get serious about the profound weakness in the leg and sent me to a neurosurgeon, who ordered a PET scan and brain MRI.   Between March and now (08/2010) I have had MRI of L/T spine (abnormal), MRI of brain (abnormal - extensive white matter changes greater than expected for age), a triple-phase abdominal scan (normal), and a PET scan (normal), along with a second EMG by another neurologist which now shows widespread lower motor neuron disease.  It has been 5 months and I am very frustrated as to why it has taken so long to come up with a diagnosis.  Why haven't I been sent to someone who might be able to send me for gait training, physical therapy, anything - no one has even bothered to ask "gee, how are you getting from point A to point B."  I feel like I've been passed around, yet to have a diagnosis and now $25,000 in debt in 5 months and still no definitive.  I have an appointment to see the second neurologist on 08/11.  Does this sound like ALS.  Everything thing I have researched is pointing to that diagnosis.  Why would not someone be more diligent about getting me into treatment.  I literally feel like I've been left out to dry.  I have excellent insurance, thank goodness, but I'm finding it harder and harder to function during the day....the symptoms are progressing much too quickly.  What should I do.