Txu4urtime
Member
- Joined
- Nov 13, 2020
- Messages
- 27
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- CA
- State
- QC
- City
- Montreal
Hello everyone,
Introduction
I’ve consulted your gracious forum for a while and felt a sense of guilt to post, given the time, effort and compassion you show us dihals.
Allow me to send you all my heartfelt appreciation. I feel guilty troubling you, but your compassion and kindness in your threads urged me on.
Context
I’ve read the read me first. It was the paragraph on Bulbar assessment which finally prompted me to post. Quote:
“Special note on assessing bulbar function: The most common areas EMG'd to assess bulbar function are under the chin or the sternocleidomastoid, and sometimes the tongue. If any of these sites were assessed , yes, you have been tested properly.”
My title was meant to evoke the response “of course not”. But there is a catch I would appreciate your insight on
Symptoms summary
I’ll will try to be brief and provide more details if necessary. 50 male, who walked regularly and did moderate strength exercise.
- June 25, 20: sudden onset very fine internal body tremors of hamstrings with mild achy And fatigued hamstrings and achy . A few weeks later internal tremors of trunk, arms, face. And hypnic jerks at nigh. Only Clonazepam 1 mg x eliminates Tremors and jerks. No anxiety involved.
- Aug 7 Onward:
- swallow issues commence. Dx with dysphagia by Occupational therapist with weakness on right side. I won’t repeat every associated symptom, but I have every “swallow” symptom noted in literature. Getting Progressively worse over 4 months. Its pretty bad.
- video fluoroscopy shows residue over aortic arch
- GI and ENT scopes of œsophagus ans throat negative. ENT believes dysphagia is neurological.
- CT scan, mri full blood work negative
- no clinical weakness
- abnormal muscle fatigue And aches in triceps, lats and hamstrings with light exercise or daily tasks (This much more prominent in Nov)
- twitches several body Parts: eyelid, triceps, biceps, buttocks, hamstring , back
Muscular neuro exam
- MS and other common Neuro disorders ruled out
- 3 different muscular Neuros
- clinical exams normal. No weakness
- tongue is fine. Speech is fine.
- I explained my bulbar like symptoms to all 3 Neuros who literally dismissed them saying “we don’t check the throat”
- 1 EMG Aug 19 (shortly after June 25 and Aug 7 onsets): 1 fasic on right knee. Dx: BFS. No bulbar EMG
- 2nd EMG Neuro: Oct 17 (still close to onset): negative results. Dx FND :- no bulbar EMG.
- 3 rd EMG Neuro: Nov 3: as noted above my muscle fatigue and aches started around Nov. Doctor did not needle symptomatic muscles. No bulbar EMG. Found a new fasc, left thigh. Dx BFS
Four final points
- There seems to be some contradiction at least in medical journals about aches and mild pain, with journals saying they can be present
- My bulbar like symptoms are textbook, however
1- the 3 Neuros are not Trained in bulbar EMGs and no neuros in Mtl, Ottawa or Toronto seem to do them. Vancouver (6 hour plane) does EMG of throat and London Ontario (does EMG of tongue. I’m in Montreal.
2- specifically explained my bulbar like symptoms but they simply referred me to the GI and ENT whose reports scopes were clean.
3- (Important) I’ve read literature and posts of clean Body EMGs despite bulbar when done too soon.
4- swallowing, clearing and coughing frequently and forcefully getting worse, gurgling, drooling , excessive saliva and a few Jaw jerks at night.
Question
1- Any general thoughts ?
2- Do I continue getting a few more body EMGs (example until anniversary of onset to see if a body EMG picks something up)
3- do I get a tongue EMG
4- and of course, you are not doctors I recognize, but any thoughts on probabilities.
again heartfelt thank you for your precious and giving time. I’m humbled to reach out to you all.
AJ
* slight corrections:
- June 25 onset: sudden fine internal Body tremors/vibrations Of both legs with achy, fatigued hamstrings. Then it spread. These fine tremors feels very systemic.
- Clonazepam 1 mg X 3 a day eliminates tremors and hypnic jerks. Without it they return fully.
- although not anxious, I also believe doctors dismissed swallow issues and attributed it to stress Because I emphasized it despite (1) not performing a bulbar EMG and (2) OT and video reports of dysphagia and residue and (3) GI and ENT scopes were negative.
thank you for allowing clarifications.
Introduction
I’ve consulted your gracious forum for a while and felt a sense of guilt to post, given the time, effort and compassion you show us dihals.
Allow me to send you all my heartfelt appreciation. I feel guilty troubling you, but your compassion and kindness in your threads urged me on.
Context
I’ve read the read me first. It was the paragraph on Bulbar assessment which finally prompted me to post. Quote:
“Special note on assessing bulbar function: The most common areas EMG'd to assess bulbar function are under the chin or the sternocleidomastoid, and sometimes the tongue. If any of these sites were assessed , yes, you have been tested properly.”
My title was meant to evoke the response “of course not”. But there is a catch I would appreciate your insight on
Symptoms summary
I’ll will try to be brief and provide more details if necessary. 50 male, who walked regularly and did moderate strength exercise.
- June 25, 20: sudden onset very fine internal body tremors of hamstrings with mild achy And fatigued hamstrings and achy . A few weeks later internal tremors of trunk, arms, face. And hypnic jerks at nigh. Only Clonazepam 1 mg x eliminates Tremors and jerks. No anxiety involved.
- Aug 7 Onward:
- swallow issues commence. Dx with dysphagia by Occupational therapist with weakness on right side. I won’t repeat every associated symptom, but I have every “swallow” symptom noted in literature. Getting Progressively worse over 4 months. Its pretty bad.
- video fluoroscopy shows residue over aortic arch
- GI and ENT scopes of œsophagus ans throat negative. ENT believes dysphagia is neurological.
- CT scan, mri full blood work negative
- no clinical weakness
- abnormal muscle fatigue And aches in triceps, lats and hamstrings with light exercise or daily tasks (This much more prominent in Nov)
- twitches several body Parts: eyelid, triceps, biceps, buttocks, hamstring , back
Muscular neuro exam
- MS and other common Neuro disorders ruled out
- 3 different muscular Neuros
- clinical exams normal. No weakness
- tongue is fine. Speech is fine.
- I explained my bulbar like symptoms to all 3 Neuros who literally dismissed them saying “we don’t check the throat”
- 1 EMG Aug 19 (shortly after June 25 and Aug 7 onsets): 1 fasic on right knee. Dx: BFS. No bulbar EMG
- 2nd EMG Neuro: Oct 17 (still close to onset): negative results. Dx FND :- no bulbar EMG.
- 3 rd EMG Neuro: Nov 3: as noted above my muscle fatigue and aches started around Nov. Doctor did not needle symptomatic muscles. No bulbar EMG. Found a new fasc, left thigh. Dx BFS
Four final points
- There seems to be some contradiction at least in medical journals about aches and mild pain, with journals saying they can be present
- My bulbar like symptoms are textbook, however
1- the 3 Neuros are not Trained in bulbar EMGs and no neuros in Mtl, Ottawa or Toronto seem to do them. Vancouver (6 hour plane) does EMG of throat and London Ontario (does EMG of tongue. I’m in Montreal.
2- specifically explained my bulbar like symptoms but they simply referred me to the GI and ENT whose reports scopes were clean.
3- (Important) I’ve read literature and posts of clean Body EMGs despite bulbar when done too soon.
4- swallowing, clearing and coughing frequently and forcefully getting worse, gurgling, drooling , excessive saliva and a few Jaw jerks at night.
Question
1- Any general thoughts ?
2- Do I continue getting a few more body EMGs (example until anniversary of onset to see if a body EMG picks something up)
3- do I get a tongue EMG
4- and of course, you are not doctors I recognize, but any thoughts on probabilities.
again heartfelt thank you for your precious and giving time. I’m humbled to reach out to you all.
AJ
* slight corrections:
- June 25 onset: sudden fine internal Body tremors/vibrations Of both legs with achy, fatigued hamstrings. Then it spread. These fine tremors feels very systemic.
- Clonazepam 1 mg X 3 a day eliminates tremors and hypnic jerks. Without it they return fully.
- although not anxious, I also believe doctors dismissed swallow issues and attributed it to stress Because I emphasized it despite (1) not performing a bulbar EMG and (2) OT and video reports of dysphagia and residue and (3) GI and ENT scopes were negative.
thank you for allowing clarifications.