Have you got Primary Progressive Apraxia of Speech? Let's connect

At my office visit with PCP she asked me if I would mind being being recorded so AI would do her charting. I asked if AI could understand my AOS because some people can’t. She said yes. (I doubt it. ) God knows what’s on my record LOL

Me too, Frustrated, embarrassed, anxious, depressed, and afraid.

Adding to this:
Sky high inflammation markers in bloodwork during initial illness

Shortness of breath if I try to talk while walking/moving about

Eating or speaking triggers a cough-comes & goes

During first 18 -20 mos, constant back of neck ache & stiffness, stiffness & full ness & pressure around ears, jaws, neck, temples

I was diagnosed with PPAOS in January 2023. I can't find any support specifically for PPAOS
I lost my speech. I feel frustrated and embarrassed

I am a 69 year old woman from MA. My speech has gradually grown worse over three years to the point that it’s usually impossible to understand and a huge effort to produce. It is a very long story, ranging from “sounds like TMI”to currently a working diagnosis of Apraxia of speech. Previous working diagnosis was oral-lingual dystonia. Over three years, I have done PT, voice therapy, speech therapy, 15 months of Botox, complete neuro work-ups, Cat scans, MRIs, EMG, PET SCAN, Movement disorders blood panel, with no answers. The Botox was with the head of a speech disorders clinic, an ENT surgeon. I’m now seeing a speech pathologist, but I sense she is encouraging me to use the Bestie app and seek further tech assistance. In my testing thus far, there is “no evidence of a neurodegenerative process, “ nor of dementia of any kind. My symptoms seem contained to my speech, as well as mouth, lips, tongue. I have some difficulty with liquids and pills, but so far, am okay eating solids. I have facial droop on the more affected side, and can not quite smile. Providers seem unanimous that I did not have a stroke. Three years ago, I started having moments of being unable to pronounce certain words correctly, such as long words or those with blends. During that time, I was having some very mild symptoms -dark under eye circles and dark, foamy urine. A month or two later, while away with my husband, I developed daily fevers, severe muscle pain in my chest and thighs, and fatigue, plus an evening of double vision that resolved the next day. My husband says I suddenly displayed voice and speech differences and a strange affect one morning. The fevers, fatigue, muscle pain, etc., lasted months, leading to many appointments, tests, scans, etc. , but no answers. Once the “mystery” symptoms gradually subsided, the speech issue continued to worsen. My anxiety is on two levels: the frustration of being unable to talk which affects every aspect of life, and the fear of the unknown. Sorry for the lengthy vent. I haven’t found anyone else with this problem to communicate with.

I am a 69 year old woman from MA. My speech has gradually grown worse over three years to the point that it’s usually impossible to understand and a huge effort to produce. It is a very long story, ranging from “sounds like TMI”to currently a working diagnosis of Apraxia of speech. Previous working diagnosis was oral-lingual dystonia. Over three years, I have done PT, voice therapy, speech therapy, 15 months of Botox, complete neuro work-ups, Cat scans, MRIs, EMG, PET SCAN, Movement disorders blood panel, with no answers. The Botox was with the head of a speech disorders clinic, an ENT surgeon. I’m now seeing a speech pathologist, but I sense she is encouraging me to use the Bestie app and seek further tech assistance. In my testing thus far, there is “no evidence of a neurodegenerative process, “ nor of dementia of any kind. My symptoms seem contained to my speech, as well as mouth, lips, tongue. I have some difficulty with liquids and pills, but so far, am okay eating solids. I have facial droop on the more affected side, and can not quite smile. Providers seem unanimous that I did not have a stroke. Three years ago, I started having moments of being unable to pronounce certain words correctly, such as long words or those with blends. During that time, I was having some very mild symptoms -dark under eye circles and dark, foamy urine. A month or two later, while away with my husband, I developed daily fevers, severe muscle pain in my chest and thighs, and fatigue, plus an evening of double vision that resolved the next day. My husband says I suddenly displayed voice and speech differences and a strange affect one morning. The fevers, fatigue, muscle pain, etc., lasted months, leading to many appointments, tests, scans, etc. , but no answers. Once the “mystery” symptoms gradually subsided, the speech issue continued to worsen. My anxiety is on two levels: the frustration of being unable to talk which affects every aspect of life, and the fear of the unknown. Sorry for the lengthy vent. I haven’t found anyone else with this problem to communicate with.