Hi all,
I posted a thread a few months ago titled “is this another ALS thread.” I got good advice to calm down from everyone and that it’s likely not ALS. That was very helpful and likely good advice for most people. Anyways, I got the diagnosis for bulbar onset today. We are working through the other exclusions, but given the speed of my symptom progression (apparently quite fast, I’m having a lot of difficulty speaking more than a few words), my mental health (I have been struggling quite a bit) and my life station (I work a demanding high stress professional job, have a two year old and my wife is three months pregnant) she felt it didn’t make sense to wait before getting us in front of the proper resources to deal with what she strongly thinks has a very very high probability to be ALS. She heads an ALS center In a major city by me. I’ll definitely be getting a second opinion, but she thinks by far the most likely possibility is ALS and the next most likely copycats have been ruled out by earlier tests. There are still some hail Mary’s left, however.
I’m making this post for a couple reasons. First, I wanted to tell someone and start to get integrated here. Since speaking has become very difficult for me, I’ve found myself turning more to online forums. I’ll likely be an active participant for as long as I can type (or I get the extremely good news that it turns out its not ALS).
Second, I had a particularly unpleasant experience with a neurologist during the diagnostic phase that I think is wort documenting for future people who are going through the process. After a couple of virtual discussions with my initial neurologist (no in-person), he ordered an MRI and a swallow study. I was getting progressively more anxious as my symptoms got worse and my speech started breaking down at work and i started having panic attacks when this happened. I started getting lightheaded and dizzy (typical anxiety symptoms) and my neurologist seemed irritated when I contacted him and wouldn’t respond with anything helpful. My GP essentially told me it was reasonable to go the ER if I was having slurred speech and dizziness. So, I did. I was seen by a speech pathologist and a rotating crew of neurologists who liked to point out my symptoms to the residents (tremors, inappropriate laughing exaggerated reflexes significant jaw tremor, etc.). The speech pathologist and neurologist who saw me in person referred me to the neuromuscular unit, and said they thought it probably wasn’t ALS as they saw no muscle wasting but was pretty clearly neuromuscular. I called the next day to make the appointment. I got a call back a few hours later from the scheduler and was informed that the neurologist who saw me virtually had called the head of the neuromuscular unit to say there was absolutely no reason to see me as I had no relevant symptoms. I sent him a bit of a nasty gram saying he had never seen me in person and on what basis was he overruling the three neurologists who did see me in person. He refused to respond and asked me to come in person.
Once I saw him in person his first words were that I sounded much better (I had said nothing but “hi”). He then conducted an exam, that examined pretty much everything that was not part of the abnormal symptoms reported. He had me do squats, walk in a line, did not check my reflexes, did not check my jaw jerk, barely looked at my tongue, etc. He then kept mentioning how my speech seemed to change minute to minute (true it would start to break down so I would slow down and focus harder). He then essentially told me he thought it was either all anxiety or that I was faking the symptoms for attention. He said I put on a “great show” for the doctors at the hospital. He then said it was irrational for me to be concerned about ALS since I could do squats, walk fine and wasn’t showing limb weakness. he recommended I take a low dose anti-depressant to help with sleep, he ordered some tests and told me to come back in 3 months. The tests were negative. I Messaged him about my worsening symptoms and asked for a speech therapy recommendation. He granted the speech therapy recommendation, but refused to refer me to any specific speech therapist and told me to call around and find one in network. I finally found one I could get in, they took a look at me and said I needed to see their ENT first. The ENT looked at me said he was quite concerned and I needed to see the head of the ALS clinic. I saw the head of the ALS clinic who reviewed my test results, examined me and gave me the diagnosis. She said she is trying to be generous, but she doesn’t understand how any neurologist could examine me and be anything other than very concerned. I want to flag that the neurologist I saw who did not take me seriously is an extremely well regarded neurologist at a top research hospital. I’m not really sure what, if any, lessons this provides to anyone in the future. But, I felt horrible for three months. My symptoms kept progressing, and I was pretty sure they were real, but had some nagging doubts that I just had serious mental health issues. I continued to think this even after a psychiatrist and two therapists told me that in their opinion there was no way my symptoms were caused by anxiety. To be quite honest, the diagnosis has felt good as I was concerned that I was going crazy and everything was just in my head. It’s nice to know my understanding of reality appears to be sound (to be honest, scarier to me than ALS).
Anyways, bitter rant about care aside, I look forward to being part of the community (unless I get great news).
