Could this be bulbar ALS?

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Txu4urtime

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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.
 

Clearwater AL

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'Thanks you for your time" (Txu4urtime)

As you wrote....

"and of course, you are not doctors...."

No we're not... but the three you have seen are Neurologists.

No one here is going to refute their findings...

"but they simply referred me to the GI and ENT whose reports
scopes were clean."

If you want to suffer through a tongue EMG... have at it.

Until then... you're wasting your time and our members
time looking for support.

You did get a diagnosis as you wrote....

"I also believe doctors dismissed swallow issues and
attributed it to stress."

Don't be in denial of anxiety... that's one of the off symptoms
of Health Anxiety for many.

"Clonazepam 1 mg X 3 a day" (Usual dosage is .05mg.)

Clonazepam works by calming your brain and nerves.
Kinda sounds like anxiety. :)

Give it time. Best.
 
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lgelb

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If dysphagia has been confirmed without a cause, you can get examined by a pulmonologist, but I would have no expectation that any findings would be related to ALS.

You don't need a "bulbar EMG" to find ALS. Besides, you seem to think your issues began in the limbs (though bodywide tremors go against ALS suspicions as well).

You have not reported loss of function, the hallmark of ALS. However, telling us that you have every swallowing symptom there is, "explaining bulbar-like symptoms" to neurologists, etc. are often characteristic of our "worried well." Thus, you can understand Al's linking your symptoms to anxiety rather than neurological illness.

I am not saying nothing is wrong, just that there is no reason to believe it's bulbar ALS.

Best,
Laurie
 

Txu4urtime

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I appreciate your input and time very much ClearwaterAL and Laurie.

My intent was not to waste your time. Sincere apologies if it came across that way.

Neuro suggested Clonazepam was for fascs.

My use of the term “every swallow bulbar symptom” was shorthand on the forum to avoid listing my symptoms. Apologies. With the Neuros i simply described the symptoms.

And finally, my post was inquiring into the “read me first” quote” I included above about a proper bulbar assessment - which was not conducted on me as per the quote— versus cases where ALS was not detected on the first few regular EMGs of the body done too soon. My 3 EMGs were all conducted within 4 months of onset.

I had read one post of a PALS who said it took them 4-5 regular body EMGs to detect ALS while he had bulbar symptoms all that time.

Therefore, I wondered based on Forum’s experience if this could be, maybe not common, but possible and whether they had heard of such misdiagnosis.

Thank you both again for sharing your thoughts with me and time. I’m grateful.

AJ
 

KimT

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Did you get a swallow test from your ENT? I'm not suggesting ALS but other issues that can be seen during a swallow test. When I had an ENT look at my throat, she ordered a swallow test.
 

Txu4urtime

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Hi Kim thank you. Yes I did two swallow tests

- regular barium swallow no obstructions

- the second was a video fluoroscopy where they make you eat different foods. They notice residue in my throat. (Sept)

- plus an occupational therapist noticed weakness on the right side of throat. (Oct)

- today one of the Neuros agreed to reassess my case given progressive dysphagia and increased abnormal muscle fatigue in my fatigue onset muscles. Triceps, hamstrings, back

my symptoms aren’t typical onset ones. Had hamstring and triceps fatigue bilateral in both, internal vibrations (which I’ve read in this forum some people feel) then two weeks later swallow Issues.

the fatigue went away because I didn’t do anything for two months. There I will admit I was worried.

About 1.5 months ago I started light exercise and now only the muscles I felt were fatigued at the onset on June 25 are now very easily fatigued at housework or light exercise and in fact are almost constantly moderately fatigued.

I’m new to any forum and maybe should have asked my question differently. It’s sometime hard to convey precisely our sentiment.

I realize how it sounds that 3 muscular Neuros have said no. My preoccupation is that none performed EMG of the throat and there is literature to suggest early body EMGs may not pick it up.

Now I’m at the point where I’m clearing my throat and coughing forcefully every time i eat. Quasi chocking and coughing food back up. Coughing with nasal regurgitation. Gurgling sounds, drooling, some Jaw jerks and excessive saliva i must consciously swallow.

not to mention more twitching and muscle fatigue I hamstrings, triceps, lats, deltoids with little effort.

thanks for your suggestion Kim.
 
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Clearwater AL

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I'm glad - "today one of the Neuros agreed to reassess my
case given progressive dysphagia"

You have posted so many indicators that point away from ALS
the odds of an ALS diagnosis is slim. Hope it's curable or at
least treatable. But... if he/she goes for another EMG post the
summary/conclusion.

PS. Please re-read Igelb"s reply above...
 
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Txu4urtime

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Thanks a lot! I appreciate it. Sorry to ask. Do I post the charts or just the conclusion notes or both?

very kind of you And i honestly feel guilty asking the The forum ... you and others... you’re all very generous

I will keep you posted on thread

heartfelt thanks
AJ
 

lgelb

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Post both.
 

Txu4urtime

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EMG set for Dec 22. I’m told (TBC) that this neuro muscular doctor can tests some bulbar muscles.

I will keep you posted. Many thanks again for your kind support. AJ
 

Clearwater AL

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Let's hope you get a Christmas Gift!

Not ALS.

Something curable.
Wish it was sooner for you. Hang in there.

(That saying is getting old but... :))
 

Txu4urtime

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Very kind of you Clearwater AL

Please no need to respond. But in addition to the many twitches throughout body (shoulders, triceps, back, buttocks, legs, feet, left eye) today I just had a visible upper limp twitching Episode.

i Fully understand - no clinical weakness no ALS- however, I can’t help but wonder with worsening dysphagia symptoms if these lip twitches are precursors that will lead to clinical weakness. In other words, progression.

please no need to respond. Just relaying latest episode.

like Clearwater AL said I wish my Dec 22 EMG was sooner.

thanks for letting me share
AJ

ps. I’ve read the read me. What I fail to understand is the the message seems to say als goes from working to not working , with nothing in between (muscle fatigue , progressive functional weakness) ... unless I’m missing something
 

Txu4urtime

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Laurie, Clearwater AL. Need your quick advice if possible.

I may have a spot Dec 8 instead but am unable to confirm if the doctor can indeed test bulbar muscles. Although a member suggested the trap muscles as proxy.

I’ve als read in credible medical resources and blogs that bulbar may not always show in the limbs.

Should I grab Dec 8 or wait until Dec 15 or the original date of Dec 22 just to somehow ensure if there is anything it shows- because again I’ve read conflicting views that says a certain number of Neuron death is needed to show on EMG and I Also don’t have Any clinical weakness. Just new muscle fatigue in onset muscles (limb onset June 25, swallow onset Aug 7)

thank you. Only if you’re up to answering.
Thank you
Anthony
 

Nikki J

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If you have bulbar symptoms as you claim then the emg would not be too early. And as stated in the sticky there are several places they can test the bulbar area. Any one is sufficient. Any one who does emgs should be able to do one of these ( they all seem to have favorites sternocleidomastoid is common around here). The emg doctor will do what is ordered though. If they are asked to look at a hand issue for example they may only do the arm
 

Txu4urtime

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Thank you Nikki. Having followed you for quite some time its an honour to have received your reply. Sincerely.

I’m still unsure, and can’t get confirmation, if this Neuro does in fact test for bulbar. Originally they said they didn’t but her colleague said she does.

go figure.

again big thank you Nikki and privileged for your time.
 
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