My neurologist would never say he didn't know what was going on but clearly it was written all over his face. (I had a stroke, I had Chronic Inflammatory Demyelinating Polyneuropathy, or diabetic neuropathy) I never had any of the typical symptoms of diabetic neuropathy such as numbness, tingling, pain and out of control glucose levels.
Yes, ALS is a disease of "rule outs" and the basic work up I received needed to be done but no one ever mentioned the possibility of ALS being my diagnosis until the day I was diagnosed. This was despite having had a previous EMG/Nerve Conduction study. Apparently, the results were ambiguous last summer but quite clear in May 2010. When confronted about not giving me any hint about ALS, my neurologist said "they don't typically tell people they are considering this diagnosis because it is life changing." Well, wondering what's going on in my body for over a year is a life changing experience, let me tell you! Needless to say my neurologist is now my ex-neurologist.
I was referred to UCI MDA ALS Neuromuscular Center (from UCLA) where I have been treated with a great deal of respect and caring. I am going to be a subject in a clinical trial for a drug that is suppose to slow the progression of the disease in addition to Rilutek.