My history:
I had a physical in 2014 in which I remember pointing out an occasional twitch between my thumb and forefinger (thenar muscle?). I can't tell you the exact timeline, but during that year, I remember more twitches, particularly in my upper body, but showing up all over. I would sit and feel like I was shivering, but I wasn't cold. It was weird, but it didn't alarm me and I basically ignored it. In January of 2015, I noticed I was missing some syllables and certain words became harder to say. That made me take some notice and go see my primary physician.
He ran a whole battery of blood tests, brain MRI, neck X-ray, you name it. Everything turned out negative, so he also referred me to a neurologist. At that point, I went Googling and, when searching for my symptoms, came up with ALS. That freaked me out, as you could expect. The first neurologist did an EMG which came up inconclusive. He was also thinking ALS, as well as Benign Fasciculation Syndrome. The EMG wasn't clean, but it didn't present enough to diagnose. Since he doesn't really handle ALS patients, he referred me to a specialist.
I went and saw that specialist a month later, and he also ran an EMG. Again, inconclusive. He felt it could be BFS except for my tongue twitching. He wanted me to come back in 6 months for another EMG and, basically, to wait it out and see if symptoms changed. I did not like this doctor at all, so I went looking for another neurologist. I felt he was fully qualified, but his bedside manner sucked, to be frank!
About 5 months later, in August, my voice got worse again. So, I made an appointment with Neurologist #3, a top guy in NYC. He didn't take my insurance so we paid full freight. Ouch. He did not perform any tests, though, but, based on my previous tests and symptoms, he felt I had Bulbar Palsy. Up until that point, I had really been thinking it was BFS, since I hadn't had any weakness in my limbs. He wanted me to come back in 2016 once I could get him on my insurance for more EMG tests, more blood and another MRI. I liked him and went about searching for new insurance.
Can I just say that health insurance in this country sucks?
99% of individual plans (I'm self employed) confine you to seeing doctors only within your own state. I needed a way to see doctors in NYC (I'm in NJ). Through a lot of digging, we found a plan, but could not get one that allowed me to see the 3rd neurologist again. Back to the hunt! In working with the ALS Society in NY, they connected me with my current neurologist, Dr. MacGowan, at Beth Israel/Mount Sinai. He offered to see me in December and only charge me a very low rate for the initial visit.
At my first visit with Dr. MacGowan, he performed an EMG, as well as all the other standard walking and strength test. Based on those findings, he officially diagnosed me with ALS. However, he said it was an atypical form, as I'd had it for two years without much in the way of symptoms. His feeling is that it's slowly progressing and may have a genetic component, but I have yet to get that tested. I've since seen him again in January for a full workup and meeting with all of his various specialists. It's really a great setup. They put you in a room and everyone comes to see you. It takes 4 hours, but it's done and you don't have to go back for 3 months.
There you have it. As you can imagine, 2015 sucked. I went 10 months with ALS hanging over my head without knowing whether I had it or not. Getting diagnosed was actually a good moment, because it brought clarity and I could move forward with some knowledge. Not that I'm thrilled with this!
My biggest concern, as I stated in the original post, is my voice has continued to worsen. I think it's progressed significantly since September, so I'm paranoid the next shoe is about to drop. Regarding the coughing, I'm not choking. I do have an overactive gag reflex, so that may have something to do with it. I put food in my mouth and start chewing and I cough. I cough when I speak sometimes as well. It's possible my throat muscles are weakening so saliva is running down into my windpipe, but I don't know for sure.
Thanks.