Txu4urtime
Member
- Joined
- Nov 13, 2020
- Messages
- 27
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- CA
- State
- QC
- City
- Montreal
Hi everyone, apologies for 2nd threat. I was hoping as you all kindly wished me well that I would not need to update you.
It's an update based on a recent informal in person consult with top NM Doctor that I consulted through a personal contact. I’ll keep to the point. Again, thank you for your support.
Recap
49 yr old male. Recall I’ve had 4 EMGs in 6 months since July limb Issues and Aug throat issues onset. Despite these 4 EMGs, top NM has new info (NM section below ).
Although onset hams, tris, and lats Muscles are getting increasingly fatigued during very basic household activity, they do no show clinical weakness However.
Recall I was Diagnosed With dysphagia in early October . it’s getting progressively worse. GI and ENT issues ruled out. Tongue is fine, I can swallow.
But now I need to to often very strongly clear My throat and cough frequently and forcefully to clear residue and secretions And Mucous in throat after eating often unsuccessfully. It used to me minor. Now needing to clear throat is very frequent.
When I cough now small residue of food comes out now. I now also snort a lot especially after eating like as if food residue gets stuck in sinuses (I can feel residue of food go back into throat) and frequent post Nasal drip.
Throat now seems to be constantly filled with food or secretions. I often need to consciously and repeatedly swallow over and over to try to get Thick secretions down , again ofTen unsuccessfully. I now also started to cough while eating recently.
Gurgling throat noises after drinking, throat burps, drooling at night, pooling of thick mucous in throat all worsening.
And brisk Jaw jerks at night worsening.
Now eating mainly puréed food. I need to wash down my food after every bite or so with apple juice (not water it pools) to make it go down smoother and not stick as much.
increased overall fatigue getting worse. Difficulty doing basic house chores. I have always been very active.
oxygen levels down to 91-92 percent when lying down trying to fall asleep. I’ve also been in good form before. Usually 94 during day. Used to be 97-98 before issues.
Now sleeping with my mouth open. Which I never did. Mouth very dry and pasty. Can’t sleep anymore breathing through nose.
Occasional sudden involuntary forceful exhalation while sleeping.
No slurring - tongue EMG performed in Dec but that NM doctor acknowledged it’s to rule out slurring not dysphagia
All other Neuro issues and other medical issues ruled out including myasthenia gravis
5th NM Informal clinical Look
- Top NM doctor in related field saw me informally through personal friend
- NM noticed muscle wastage in both hamstrings, left bicep and back (Dents, crevices). NM noted that while my neuropathic pain In hamstrings and tris is rare, it can be seen early on in 2-10 % Of people.
- NM said usually slurring happens first if bulbar first but dysphagia can occur first occasionally.
- NM noticed when I ate a rice cake with peanut butter I had difficulty swallowing it near the right pharyngeal muscles where occupational therapist saw weakness in October. I had to hurry and wash it down with apple juice because it was going down so slowly.
- NM acknowledges that limb muscles are 5/5. No clinical weakness.
- NM said while nighttime myoclonus is very rare it has been seen. Also said that while internal body tremors are extremely rare, it can happen. I believe before joining this forum I saw members speak of these issues
- Full body twitching now.
- Mild calf cramping I had early on is now more painful. Not severe but more painful.
- NM puzzled that 4 EMGs did not pick up anything despite dysphagia and muscle wastage, however nM did say it can sometimes take up to 12 months or so. NM said in neurology Time will tell.
Next steps
. NM ordered new video fluoroscopy to compare against Sept one that saw residue near aortic arch. NM believes residue is now at throat level close to Adam’s apple.
. NM referred me to a pulmonologist
. NM wants to wait until June to conduct another EMG
Meanwhile, my dysphagia and thick secretions/food residue slowly worsening. Any advice for that ?
We all have our crosses to bare and as a 49 year old loving father of a loving 7 year old boy, I’d be lying if I said I wasn’t concerned
thank you again AJ
ps. My GP for 6 months consults over the phone always maintained it was anxiety especially with 4 negative EMGs. He saw me in person last week and I showed him the wastage, swallow test and my fatigue and made a 180 and said “as a scientist (he uses that a lot) I cannot rule it out at this point”...
It's an update based on a recent informal in person consult with top NM Doctor that I consulted through a personal contact. I’ll keep to the point. Again, thank you for your support.
Recap
49 yr old male. Recall I’ve had 4 EMGs in 6 months since July limb Issues and Aug throat issues onset. Despite these 4 EMGs, top NM has new info (NM section below ).
Although onset hams, tris, and lats Muscles are getting increasingly fatigued during very basic household activity, they do no show clinical weakness However.
Recall I was Diagnosed With dysphagia in early October . it’s getting progressively worse. GI and ENT issues ruled out. Tongue is fine, I can swallow.
But now I need to to often very strongly clear My throat and cough frequently and forcefully to clear residue and secretions And Mucous in throat after eating often unsuccessfully. It used to me minor. Now needing to clear throat is very frequent.
When I cough now small residue of food comes out now. I now also snort a lot especially after eating like as if food residue gets stuck in sinuses (I can feel residue of food go back into throat) and frequent post Nasal drip.
Throat now seems to be constantly filled with food or secretions. I often need to consciously and repeatedly swallow over and over to try to get Thick secretions down , again ofTen unsuccessfully. I now also started to cough while eating recently.
Gurgling throat noises after drinking, throat burps, drooling at night, pooling of thick mucous in throat all worsening.
And brisk Jaw jerks at night worsening.
Now eating mainly puréed food. I need to wash down my food after every bite or so with apple juice (not water it pools) to make it go down smoother and not stick as much.
increased overall fatigue getting worse. Difficulty doing basic house chores. I have always been very active.
oxygen levels down to 91-92 percent when lying down trying to fall asleep. I’ve also been in good form before. Usually 94 during day. Used to be 97-98 before issues.
Now sleeping with my mouth open. Which I never did. Mouth very dry and pasty. Can’t sleep anymore breathing through nose.
Occasional sudden involuntary forceful exhalation while sleeping.
No slurring - tongue EMG performed in Dec but that NM doctor acknowledged it’s to rule out slurring not dysphagia
All other Neuro issues and other medical issues ruled out including myasthenia gravis
5th NM Informal clinical Look
- Top NM doctor in related field saw me informally through personal friend
- NM noticed muscle wastage in both hamstrings, left bicep and back (Dents, crevices). NM noted that while my neuropathic pain In hamstrings and tris is rare, it can be seen early on in 2-10 % Of people.
- NM said usually slurring happens first if bulbar first but dysphagia can occur first occasionally.
- NM noticed when I ate a rice cake with peanut butter I had difficulty swallowing it near the right pharyngeal muscles where occupational therapist saw weakness in October. I had to hurry and wash it down with apple juice because it was going down so slowly.
- NM acknowledges that limb muscles are 5/5. No clinical weakness.
- NM said while nighttime myoclonus is very rare it has been seen. Also said that while internal body tremors are extremely rare, it can happen. I believe before joining this forum I saw members speak of these issues
- Full body twitching now.
- Mild calf cramping I had early on is now more painful. Not severe but more painful.
- NM puzzled that 4 EMGs did not pick up anything despite dysphagia and muscle wastage, however nM did say it can sometimes take up to 12 months or so. NM said in neurology Time will tell.
Next steps
. NM ordered new video fluoroscopy to compare against Sept one that saw residue near aortic arch. NM believes residue is now at throat level close to Adam’s apple.
. NM referred me to a pulmonologist
. NM wants to wait until June to conduct another EMG
Meanwhile, my dysphagia and thick secretions/food residue slowly worsening. Any advice for that ?
We all have our crosses to bare and as a 49 year old loving father of a loving 7 year old boy, I’d be lying if I said I wasn’t concerned
thank you again AJ
ps. My GP for 6 months consults over the phone always maintained it was anxiety especially with 4 negative EMGs. He saw me in person last week and I showed him the wastage, swallow test and my fatigue and made a 180 and said “as a scientist (he uses that a lot) I cannot rule it out at this point”...
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