MadMa- Even I can tell you unequivocally that you do not have ALS - after all that time there would be significant deficits. No way it would hide dormant for YEARS. No way. YOu are FINE. How clearly I can see it with you, but not myself.
You raise an interesting point about neck injuries. I have several severe herniations from c4-c7 which I need to see a neurosurgeon about next week. They have stiffened up my neck and trap area something awful; My physical therapist also tells me a lot of my neck muscles have knots which are causing my throat issues/ear issues. Jess, like your husband, I have throat issues suddenly too. I have this involuntary swallowing reflex that kicks in when I try to go to sleep or wake up. Very weird. And a constant sore throat and painful tongue, yet not when I eat or swallow. I am told slurring is the first in ALS with swallowing issues, but I have convinced myself I have the "precursor." Of course I have all interpreted this as bulbar.
Mine started with headaches and facial pain issues in August. That progressed to severe muscle spasms in the neck, stiff neck and occipital headaches. All with nerve type pain in the teeth, jaw, etc. It would come on as head rushes or attacks and I could not sleep for days. My neuro did not know if I was having migraines, seizures, etc. but they were DAILY. It did follow a very bad flu, so maybe post viral? In any event, I was fine with all that but then I started getting severe burning arms and traps and shoulders when I slept and then the twitching started at the same time.
I hear you about anxiety/psych issues. I have been on the health rollercoaster since August, and with every dr shrugging their shoulders and a lack of diagnosis I have imagined many illnesses along the way with each test-- including a cancer that only 5% of cancer patients get in their meninges of their brain- and I don't even have cancer! Ive had 2 hospitalizations, 3 brain MRI's, cervical MRI, lumbar puncture (which I forced), EEG, EMG (which again I forced, two neuros said no ALS). So I have been so worked up and I thought the EMG would put everything to rest but I am just as keyed up as ever, so the twitching is not really subsiding. I am 45 (female) and imagine maybe I am beginning some bizarre perimenopausal thing. The neuromuscular specialist I saw who did the EMG said "benign fasciculation syndrome" and he thought my trap/shoulder issues and all my weird ear/head/face pains were myofacial (kind of like the little sister of fibromyalgia- just top half of body).
I am through with conventional medicine and vowed accupuncture, yoga, meditation to get back on track, yet every day that goes by I seek the reassurance of another doctor... my family is done with me and ready to commit me. I have 3 beautiful kids (2 who are preschoolers) and am so depressed that I can't enjoy them. Health anxiety is the pits.
Thanks for your comments. I think once the twitching subsides (crossing fingers) I will be in a much better state of mind.