[Johnny5]

My progression is slow. I had my 1st of 8 EMGs in 07/2015. My next two EMGs were in 2017. I went from an AFO to an KAFO before the VA gave up looking, so I went to a non-VA neuromuscular specialist. It took 2 more years before I got my 1st diagnosis in Oct 2019. Then the VA finally recognized my condition in May 2021 (2nd confirmation).

I think one of the barriers was that the providers I had were clueless about ALS and did not know how to connect the dots. I was misdiagnosed 4 times before 2021.

[Johnny5]

This is what my VA Dr suggested (that it was age-related). Then I did some research to check and found that there is some comprehensive research covering this issue. See section 4.4 linked below.

Anomia is the problem I suspect is an issue with a percentage of us pALS.
“Visual anomia or optic aphasia was first described by Freund in 1889 and refers to being unable to name objects presented in visual modality, but able to name the same objects when perceived tactually or when given a verbal definition of their function and use” (from ScienceDirect.com)

I have been doing this for 2 “ish” years. The VA has no clue how to diagnose it.

“Recent evidence regarding language disturbances in ALS-FTSD suggests impaired semantic and syntactic processing. Semantic deficits mostly manifest as anomia during confrontation naming or single word comprehension difficulties.”

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8065866/

ncbi.nlm.nih.gov

Cognitive and Behavioral Manifestations in ALS: Beyond Motor System Involvement

Amyotrophic lateral sclerosis (ALS) has long been considered to be a purely motor disorder. However, it has become apparent that many ALS patients develop cognitive and behavioral manifestations similar to frontotemporal dementia and the term amyotrophic ...