- Joined
- Sep 4, 2023
- Messages
- 0
- Reason
- PALS
- Diagnosis
- 09/2023
- Country
- US
- State
- CA
- City
- San Diego
Greetings all,
First of all, thanks for creating -and maintaining- such a quality site that provides so much value and information. I have been using the site since June as I was going through my work up.
By way of introduction, I am 59 and received the diagnosis of ALS: bulbar-onset at a university ALS clinic in Southern California. Prior to that I had local visits to a neurologist who seemed reluctant to diagnose me with ALS because my EMG findings were equivocal due to lack of ‘fibrillation’ signals at rest. I was told by the university ALS specialist that EMG may not be diagnostic for ALS in bulbar-onset because the neuronal degeneration is at the brainstem level, and not yet at the cervical/motor cortex level.
I will share a brief history in hopes it will help others, as I didn’t see an abundance of posting of bulbar-onset. My symptoms started December 2022 when I noticed rare slurring of speech. I had slow progression/worsening until June 2023 when I had to stop work due to my dysarthria which was exhausting. Delay in diagnosing dysarthria was due to my prior history of vocal cord dysfunction which had resolved a year prior.
Of note, twitching in right arm started in March, and has now progressed to both arms and is just now beginning in both legs. I am slowly losing strength/muscle mass in both arms. At the same time in March, I noticed increased salivation. In June I had my EMG. MRI of brain and neck were negative. Blood work for multi focal motor neuropathy and general inflammation negative. Heavy metals negative.
I began having trouble swallowing and had occasional aspiration starting in June. I started Nuedexta at the urging of my wife mid-July in hopes that it would improve speech and swallowing. Thus far, no improvement, but fortunately no worsening. As most of you know, it is a drug originally intended for psuedobulbar affect, but is shown to improve speech and swallowing.
After many delays and phone calls, I arranged a visit to the ALS clinic where I got the diagnosis in mid September. Not a lot of hope there; no info on clinical trials, and only a luke-warm endorsement of Radicava of which I just completed my first 14 days. Apparently they want me to be on Radicava for at least 6 weeks before starting the butyrate-based med (relyvrio).
I have a pending lumbar puncture for completeness sake, and will seek another perspective/opinion in the near future.
I would welcome any comments or suggestions as someone new to this.
Specifically:
1. My voice is failing; I heard about voice banking and that the ‘Gleason’ foundation may offer assistance. Does anyone have experience with this?
2. Should I push for Relyrio, or other meds?
3. I have seen that near-red and infra-red light therapy has had benefit in Parkinson’s disease. I am looking into it for me but am curious if anyone has experience with this modality.
4. Neuronal Mitochondrial function and cellular autophagy (cleanup) seem to be a problem with ALS. Apparently fasting can promote neuronal ‘housekeeping’ and improve mitochondrial function. Any experience with occasional 24 hour fasting or with cold water immersion?
Thanks, and God Bless you all!
First of all, thanks for creating -and maintaining- such a quality site that provides so much value and information. I have been using the site since June as I was going through my work up.
By way of introduction, I am 59 and received the diagnosis of ALS: bulbar-onset at a university ALS clinic in Southern California. Prior to that I had local visits to a neurologist who seemed reluctant to diagnose me with ALS because my EMG findings were equivocal due to lack of ‘fibrillation’ signals at rest. I was told by the university ALS specialist that EMG may not be diagnostic for ALS in bulbar-onset because the neuronal degeneration is at the brainstem level, and not yet at the cervical/motor cortex level.
I will share a brief history in hopes it will help others, as I didn’t see an abundance of posting of bulbar-onset. My symptoms started December 2022 when I noticed rare slurring of speech. I had slow progression/worsening until June 2023 when I had to stop work due to my dysarthria which was exhausting. Delay in diagnosing dysarthria was due to my prior history of vocal cord dysfunction which had resolved a year prior.
Of note, twitching in right arm started in March, and has now progressed to both arms and is just now beginning in both legs. I am slowly losing strength/muscle mass in both arms. At the same time in March, I noticed increased salivation. In June I had my EMG. MRI of brain and neck were negative. Blood work for multi focal motor neuropathy and general inflammation negative. Heavy metals negative.
I began having trouble swallowing and had occasional aspiration starting in June. I started Nuedexta at the urging of my wife mid-July in hopes that it would improve speech and swallowing. Thus far, no improvement, but fortunately no worsening. As most of you know, it is a drug originally intended for psuedobulbar affect, but is shown to improve speech and swallowing.
After many delays and phone calls, I arranged a visit to the ALS clinic where I got the diagnosis in mid September. Not a lot of hope there; no info on clinical trials, and only a luke-warm endorsement of Radicava of which I just completed my first 14 days. Apparently they want me to be on Radicava for at least 6 weeks before starting the butyrate-based med (relyvrio).
I have a pending lumbar puncture for completeness sake, and will seek another perspective/opinion in the near future.
I would welcome any comments or suggestions as someone new to this.
Specifically:
1. My voice is failing; I heard about voice banking and that the ‘Gleason’ foundation may offer assistance. Does anyone have experience with this?
2. Should I push for Relyrio, or other meds?
3. I have seen that near-red and infra-red light therapy has had benefit in Parkinson’s disease. I am looking into it for me but am curious if anyone has experience with this modality.
4. Neuronal Mitochondrial function and cellular autophagy (cleanup) seem to be a problem with ALS. Apparently fasting can promote neuronal ‘housekeeping’ and improve mitochondrial function. Any experience with occasional 24 hour fasting or with cold water immersion?
Thanks, and God Bless you all!