Update
I apologize for causing a ruckus and not updating sooner. I ended up having a lot more limited online capabilities than I expected in MN, and a couple of blow-ups back home at work had me using the little time I had with a connection to put out fires.
We just got in a little while ago (still not unpacked
), and I noticed the PM alerts in my inbox. Needless to say, I am touched by the amount of caring and compassion I have seen and experienced on this forum.
So, with that, on to the update.
The Mayo was an incredible experience in terms of medical efficiency. What usually takes a month or more of scheduling and appointments can be handled in a few days. Unfortunately, the results were not everything I had hoped for. I'll get the good news out of the way first. The neurologist does not think its ALS
.
As before, my reflexes continue to remain normal. I had a repeat NCS and EMG that focused on my left side, a few spots on my back and shoulder, and a stab into thenar area (OK I will revise what I said about the EMGs in the past. They are mostly uncomfortable, stabbing the thumb pad does hurt.) This results of the EMG were "normal."
I met with a speech pathologist who reviewed the swallowing difficulty, and we repeated the full swallow study. More good news, still no aspiration, and mechanically everything seems to be working within the normal range. She said that she did not she the trouble with initiation that the earlier swallow study showed, but did caution that what we had was a snapshot in time and that depending on the cause swallowing difficulty can ebb and flow.
I think more for kicks than anything else, the endoscopy was repeated. I still do not have the full results (the Dr. and I have missed each other a couple of times), however the initial assessment was good. The neuro also did a repeat assessment for MG antibodies, which was also negative.
Now the frustrating news. The neuro said that he was not sure what was going on. The muscle lab did see some anomalies with the biopsy slide, but felt that they were more likely to be artifacts from the slide preparation. Its possible that my pernicious anemia proceeded my infection, and there was more going on behind the scenes that the infection compounded. Rogue virus is still a possibility. At this point the neuro felt wait and see was the best approach, but reassured me that after 18 months if it were ALS there would be some significant change in fuction that could be picked up via EMG or other test.
Hopefully, we are approaching a plateau. The blessed me gradually working back into my exercise routine, and seeing what happens. He cautioned, though, that I should start with walking, and when I could walk a brisk mile and still feel fine afterwards, I could work on to other things.
I'm going to take the trip as a win. No I don't "feel" better per say, but I do feel reassured that it is something that I can live with, or will eventually get better. Don't worry about me going anywhere in the meantime. I still have to design the undiagnosed patch and theme song
As always, best wishes,
Robert
PS My wife and I got to eat at Fogo de Chao. We met in Brazil, so it is a wonderful way to reminisce. Plus when you speak Portugeuse to the native servers, you get the royal treatment