- Joined
- Jul 29, 2017
- Messages
- 3,933
- Reason
- PALS
- Diagnosis
- 07/2017
- Country
- US
- State
- OR
- City
- Southern Oregon
Back in July/ August, I posted that my neuromuscular disease specialist felt I had a definite motor neuron disease, possibly ALS. However he didn’t want to officially confirm ALS at that time because I didn’t have much in the way of upper motor neuron findings and he also wanted to document disease progression over time. He was also considering PMA as a possibility. A second opinion at a university medical center didn’t add much.
Fast forward to followup neuro visit today. My disease has progressed to lower motor neuron findings in all 4 spinal segments along with very brisk reflexes and EMG now consistent with ALS in all regions. So the neurologist was able to confirm a diagnosis of ALS which was not at all a surprise to me.
The good news is he feels I am progressing slowly and should have many more good years ahead of me. Yeah! The other great news is that the EMG on the bulbar region (genioglossus muscle) showed only mild abnormalities at this time. That, along with the fact that my hands still function reasonably well, gives me hope that I can keep playing my beloved bassoon at least a little while longer.
I was a physician by profession, but I have enjoyed a parallel career as a bassoonist , playing professionally. I play principal bassoon in a great orchestra and retired from my medical career at the end of 2015 to allow me more time and energy to pursue my music. I know that with ALS, this will all come to an end sooner than I would have liked. However, I should be able to play Tchaikovsky Symphony # 5 (one of my all time favorite pieces) in January, and hope to still be playing in April when we will be performing Beethoven’s 9th symphony. So despite confirmation that I have a sucky disease, I actually feel rather hopeful.
I love this forum and look forward to more sharing and posting. Love you all.
Fast forward to followup neuro visit today. My disease has progressed to lower motor neuron findings in all 4 spinal segments along with very brisk reflexes and EMG now consistent with ALS in all regions. So the neurologist was able to confirm a diagnosis of ALS which was not at all a surprise to me.
The good news is he feels I am progressing slowly and should have many more good years ahead of me. Yeah! The other great news is that the EMG on the bulbar region (genioglossus muscle) showed only mild abnormalities at this time. That, along with the fact that my hands still function reasonably well, gives me hope that I can keep playing my beloved bassoon at least a little while longer.
I was a physician by profession, but I have enjoyed a parallel career as a bassoonist , playing professionally. I play principal bassoon in a great orchestra and retired from my medical career at the end of 2015 to allow me more time and energy to pursue my music. I know that with ALS, this will all come to an end sooner than I would have liked. However, I should be able to play Tchaikovsky Symphony # 5 (one of my all time favorite pieces) in January, and hope to still be playing in April when we will be performing Beethoven’s 9th symphony. So despite confirmation that I have a sucky disease, I actually feel rather hopeful.
I love this forum and look forward to more sharing and posting. Love you all.