ersmzd
Member
- Joined
- Jan 28, 2017
- Messages
- 13
- Reason
- Loved one DX
- Diagnosis
- 01/2017
- Country
- US
- State
- IL
- City
- Morton
It was sometime last spring when my Mom's voice started sounding hoarse. She discounted it as being sick since she typically loses her voice once a year for a couple weeks when she gets a cold.
In June, my best friend got married and she couldn't stop crying. She said she was just tired ,but now I assume it was the Pseudobulbar affect.
In August she had an episode where she was short of breath but it quickly subsided . Then in early September we were at a theme park and she was short of breath. We figured it was just from the activity. It was hot and hilly. In September they came to visit me (I live 6 hours from my parents), and we took her to the hospital because she woke up and was having trouble breathing. The hospital ran a few tests and released her.
She then went to a Pulmonologist and a Cardiologist. In the meantime (in November) ,she noticed muscle atrophy in her left hand between her thumb and finger. Eventually they referred her to a Neurologist. He ran several tests and wasn't certain he could accurately diagnose her so she was referred to Mayo. We were there for 3 days and on January 27, 2017, she was diagnosed with Possible Sporadic Bulbar Onset ALS and they prescribed Neudexta, Riluzole, and a Bipap.
This weekend I went to visit and looked at the medical records Mayo sent. Her FVC is 34% and her CO2 is 55 mmhg. I have a lot of research to do and her first ALS clinic appointment is on February 27.
I feel like her progression has been fairly slow so far considering, but the respiratory numbers have me very concerned. I know Bulbar Onset has the shortest survival time overall. She hasn't made any decisions regarding feeding tubes and vents, but I hope once we go to the clinic we can get her to talk about it.
My Mom is 61 years old and has a history of head trauma including car accidents and a fall at work that resulted in a concussion, brain swelling, and 2 bones in her neck being fused together. She has also had botox injections 4 times a year for the last 5 or more years in her neck and head as a result of chronic pain from that work incident.
~Elizabeth
In June, my best friend got married and she couldn't stop crying. She said she was just tired ,but now I assume it was the Pseudobulbar affect.
In August she had an episode where she was short of breath but it quickly subsided . Then in early September we were at a theme park and she was short of breath. We figured it was just from the activity. It was hot and hilly. In September they came to visit me (I live 6 hours from my parents), and we took her to the hospital because she woke up and was having trouble breathing. The hospital ran a few tests and released her.
She then went to a Pulmonologist and a Cardiologist. In the meantime (in November) ,she noticed muscle atrophy in her left hand between her thumb and finger. Eventually they referred her to a Neurologist. He ran several tests and wasn't certain he could accurately diagnose her so she was referred to Mayo. We were there for 3 days and on January 27, 2017, she was diagnosed with Possible Sporadic Bulbar Onset ALS and they prescribed Neudexta, Riluzole, and a Bipap.
This weekend I went to visit and looked at the medical records Mayo sent. Her FVC is 34% and her CO2 is 55 mmhg. I have a lot of research to do and her first ALS clinic appointment is on February 27.
I feel like her progression has been fairly slow so far considering, but the respiratory numbers have me very concerned. I know Bulbar Onset has the shortest survival time overall. She hasn't made any decisions regarding feeding tubes and vents, but I hope once we go to the clinic we can get her to talk about it.
My Mom is 61 years old and has a history of head trauma including car accidents and a fall at work that resulted in a concussion, brain swelling, and 2 bones in her neck being fused together. She has also had botox injections 4 times a year for the last 5 or more years in her neck and head as a result of chronic pain from that work incident.
~Elizabeth
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