kellykago
Active member
- Joined
- Feb 11, 2012
- Messages
- 63
- Reason
- PALS
- Diagnosis
- 12/2016
- Country
- US
- State
- CA
- City
- Fairfield
My name is Kelly and I am 47 years old. My father passed away from bulbar onset ALS in February 2012, after a 4 month battle.
About a year ago, I began noticing slight slurring of my words. It wasn't all the time, so I dismissed it. About Jan or Feb of 2016 I began noticing that my slurring was more constant and I brought it to the attention of my primary care physician, who ordered an MRI, suspecting MS. My MRI was normal. She sent me to a neurologist who could hear my slurring and ordered EMG/Nerve tests and speech assessment in March 2016, which were normal.
I saw a new neurologist in July 2016. She ordered genetic testing, pulmonary function testing, and speech testing. My genetic testing came back with a variant on my ALS2 gene although they do not believe this to be a significant finding. My pulmonary function was fine, but speech therapist diagnosed mild dysarthria and mild dysphagia. and tongue fasciculation. Recently, I have noticed that I get really short of breath when speaking so she is going to redo my pulmonary function. I redo my EMG/Nerve tests on Sept 26.
My question is, has anyone else experienced such a slow progression? I don't have an official diagnosis since I have only lower motor neuron deficiencies, but I keep telling myself that it can't be ALS since I haven't noticed any other symptoms. I am noticing though, that my speech is getting more "nasaly", as did my speech therapist on my second visit to her.
Although I don't have a diagnosis, she gave me als handouts on speaking and eating strategies. I am preparing myself for the worst, but hoping for the best. My faith in God is strong and no matter what, I know he will hold me in his hand
About a year ago, I began noticing slight slurring of my words. It wasn't all the time, so I dismissed it. About Jan or Feb of 2016 I began noticing that my slurring was more constant and I brought it to the attention of my primary care physician, who ordered an MRI, suspecting MS. My MRI was normal. She sent me to a neurologist who could hear my slurring and ordered EMG/Nerve tests and speech assessment in March 2016, which were normal.
I saw a new neurologist in July 2016. She ordered genetic testing, pulmonary function testing, and speech testing. My genetic testing came back with a variant on my ALS2 gene although they do not believe this to be a significant finding. My pulmonary function was fine, but speech therapist diagnosed mild dysarthria and mild dysphagia. and tongue fasciculation. Recently, I have noticed that I get really short of breath when speaking so she is going to redo my pulmonary function. I redo my EMG/Nerve tests on Sept 26.
My question is, has anyone else experienced such a slow progression? I don't have an official diagnosis since I have only lower motor neuron deficiencies, but I keep telling myself that it can't be ALS since I haven't noticed any other symptoms. I am noticing though, that my speech is getting more "nasaly", as did my speech therapist on my second visit to her.
Although I don't have a diagnosis, she gave me als handouts on speaking and eating strategies. I am preparing myself for the worst, but hoping for the best. My faith in God is strong and no matter what, I know he will hold me in his hand
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