Al -
I'm not sure how to answer the limb vs bulbar onset question.
Thirteen years ago I was diagnosed with akalasia which is a swallowing problem cause by the base of the esophagus sticking shut preventing me from being able to eat. This damaged the muscles of the esophagus and was addressed surgically with a balloon used to dilate the base of my espohagus so that it is permanently open. Ever since then I have had reflux and swallowing problems, not severe but persistent.
Then about two years ago I noticed weakness in my right thumb and forefinger. My GP told me it was arthritis but over time the rest of my fingers and wrist continued to weaken so I went to a neurologist, about a year after symptoms began, to see if I had carpal tunnel. My first exam included an EMG, MRI , neck Xrays by a neursurgeon. The result - no clear diagnosis but rue outs on te carpal tunnel and anything like a pinched nerve. I was otherwise active including regular exercise swimming three to four days per week. However, I had broken my ankle shortly before seeing the neurologist for the first work up. After six moonths sof neuro eval I was left wit hmaybe it wan a brachial plexitis or maybe monomelic amyotropy (sp?). My right hand continued to wither - I can't grip, button, zipper, hod a heavy cup, turn keys, etc.
So I was scheduled for a six month follow up this October. In late August I had an episode where I went for a long, brisk walk and noticed my rigt leg seemed weaker than the left and the knee seemed to flex less. I had a cramp in my right calf for about three day after this. Then I had a similar episode around the end of September. Meanwhile I am still swimming about 1-1/2 miles 3-4 times a week. Then also the end of September I noticed problems with my left forefinger and thumb like how the truble with my right hand began. Then I realized that my right calf had never regained its girth that was lost when I had the broken ankle.
So all of this I presented to the neurologist when I had my follow up. He immediately suspected ALS, sent me to a specalist in motor neuron disease for a second opinion, and ran a more comprehensive EMG which detected probems in bot my legs as well as the right arm (he didn't test the left arm). The doc who gave the second opinion concurred that I definitely have ALS. I have been referred to a regional ALS Clinic and will start treatment there in a few weeks. A pulmonary eval is one of the first things they will do there. I started swimming again after taking the last few weeks off because I was so scared. I still feel good in the water but am very fatigued otherwise. Am also working full time. They gave me Xanax because I was so anxious and I take this in the a.m. but at night I prefer a drink or two and that is the only time of day I really can calm down.
Don't know what you can make of all that. I guess the folks at the ALS Cinic can shed some light on things.
Thanks to you and the others for your concern. I'm sure I'll be visiting often.