Could this be bulbar ALS?

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Txu4urtime

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Folks where are these stickies ? How do I find them please ?

I’d like to find what other muscles they can check because so far 3 neuros said they were not comfortable with sternocleidomastoid because of the proximity to arteries.

womder if chin, tongue and traps are part of it so that I can ask Dr to perform. Just not sure how to access stickies

sorry and tx you
 

Nikki J

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Txu4urtime

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Thanks Nikki. I’ve read that several times and remember that paragraph. I thought the stickies were the tags. My bad. Thank you again Nikki

if they don’t do neck I’ll ask for chin and traps.
 

Txu4urtime

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Just FYI. No need to respond. I confirmed that this Neuro can only needle the tongue.

not pleasant but progressively dysphagia worsening so no choice ... and re-read sticky and tongue needle can detect or rule out Bulbar (dysphagia).

will kindly ask doctor to perform tongue EMG and get back to you and post results. Thank you again for kind support.

EMG Dec 8
 

Clearwater AL

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You have been so insistent and persistent to pursue a
diagnosis of ALS. The long path you have pursued through
Neurologists and others to satisfy your concerns.... a
specialist Neuro may agree (MAY agree after review
of the previous Nueros) to do a tongue EMG.
You been told this is really unneeded to reveal
Bulbar ALS. He may concur

Have at it… its your suffering. But, remember this…
if that neuro agrees to do a tongue EMG he will
be very well paid $$$ for that procedure. Either you
have excellent insurance or you can afford to pay for this
out of pocket. If you have excellent insurance, they
will (have) reviewed previous claim submissions,
with results/findings. Don’t be surprised if they deny
this one.

Whatever. Most important…
post the summary/conclusion that will be at the bottom
of the report which may be available same day or
within 24 hours.

Let us know. Until then…
 

lgelb

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The decision as to what muscles they test is based on your clinical history. It is not whether they have some kind of pre-existing policy that applies to everyone.
 

Txu4urtime

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Will do Clearwater AL. I see and respect your point.

it’s just the dysphagia has really worsened. I can’t go a few minutes without having to forcefully clear out throat or cough out residue in throat especially after eating. Or snort all the time, drool, gurgle sounds and jaw jerks.

and I’ve read body EMGs don’t always pick up bulbar.

but I see your perspective. I wish they did the neck muscle or chin instead as Nikki suggested . Not trained in that it seems.

thanks for input

ps. Given clean scopes from GI and ENT, what in the name could be causing it I want to ask them if it isn’t what we don’t want it to be.
 

Txu4urtime

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Good point Laurie. I told all three Neuros about swallowing issues worsening and, truthfully, they didn’t pay much attention to it.

clinically they would see I had trouble swallow water etc.

I’m in Canada smaller city Centre. Not sure if US or UK they would give a patient’s word on swallowing issues (confirmed my video swallow and therapist) more attention?

nope, here they simply referee me to GI and ENT and all clear.

and I realize most often don’t need to test for bulbar but I’ve read of exceptions hence why I simply want them to do a bulbar test and put mind at ease but then, of course, tell me what could be causing progressive Objective dysphagia.

will give you Nameless results as soon as I have them

thanks Laurie .. appreciate your input too very much
 

Txu4urtime

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Please no need to respond... just relaying what I had omitted to mention apart from facs that one RNS noticed on left hand 3rd digit “decrement” that was “below significant” level. Below 10%

Sorry for posting, just find it unnerving that the joint on that very finger and the Joint on same finger on the other hand are painful and I’ve read decrement can possibly be associated.

never had hand joint pain ever before and it starts now... unwelcome coincidence

I’ll report back Dec 8. I acknowledge openly to you it’s difficult to clear my mind when throat (As explained earlier) issues are especially bothersome ...

Thank you for reading...AJ
 

Bestfriends14

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Please stop this and move on from the forum. You've been answered by numerous doctors and forums members that you don't have ALS. It is not up to the members here to handhold your anxiety.

Perhaps it's best you seek counseling if your unfounded fears are controlling your life, as it appears they may be.

Good luck to you.
 

Txu4urtime

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Sorry wasn’t my intention at all. I’m truly sorry. I’ll stay completely off radar until Dec 8 and send in results. I’ll delete question. Apologies
 

Txu4urtime

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Please Forgive me Bestfriends14 and all, I am very clear on what BF14 and I said in previous post.

I respect what BF14 was saying. Sincerely, I truly do. And I understand and heartedly appreciate the effort you provide to us and you are Incredibly giving.

I do not take it for granted for one moment that is why I hesitated for days to post this not to bother.


I’m sorry to post, However, this is new factual information (not anxiety) about 3rd NCS/EMG on Nov 3 with General Neuro (Neuro #3) I received and I was wondering if some on the forum would possibly think providing insight or opinions may be helpful for me or questions I should ask.

General Neuro (Neuro #3) is very curt and uncommunicative on findings.

Of course, I will address these in my upcoming Follow up with NM1 doctor Apt now scheduled for Dec 1.

*** Please read no further if you feel I should simply take it up with my NM1 doctor *** I sincerely don’t want to take up time unduly***

————-
As my dysphagia progressively worsens by the month, I am Just trying to understand these Neuro #3 findings.

I received from a friendly admin a verbal summary (they are backlogged for sending digital copies at this hospital) of my 3rd NCS/EMG (Nov 3) with this regular Neuro doctor. (Neuro 3)

this hospitals reports Seem very basic I was told.


NM 1 (Different Hospital) with whom my follow up apt is now Dec 1 found the verbal findings I shared with Her “curious” despite the report’s final conclusion of BFS (NM 1 will receive urgent copy Nov 30)

Regular Neuro 3 report said:Nov 3

1- patient shows hyperreflexia. The report apparently didn’t say where or if bilateral. No other details. I just vaguely recall her testing several different areas. It appears like somewhat more generalized Hyperreflexia the way it was worded. Please note that my clinical assessments reports with NM1 and NM2 (Same hospital) on Aug 19 and Oct 7 respectively were very detailed and reflexes normal at 2 + in both instances.

2- Neuro 3 : tibia anterior left: some recruitment. Please note that NM2 EMG of same muscle On Oct 7, less than a month before, found no recruitment issues

3- Neuro 3 clinical exam made no mention of dysphagia Dx that is worsening considerably by the month despite me mentioning it, despite her own OT noticing weakness on right side of throat and despite GI and ENT scopes negative. (thin liquids, managing saliva, mucous, very Very forceful clearing throat and coughing after eating and almost throughout day, jaw twitching At times esp at night).

4- Neuro 3: NCS normal. Please note initial NCS with NM1 found H reflex latency of right soleus muscle was quicker than expected (2-3 ms). Moreover, RNS with NM2 showed decrement of digit 3 in left hand under 10 percent, So Deemed insignificant (Although knuckles Of digit 3 in both hands started hurting a few weeks prior)

5- Neuro 3: no fascs, no mups. etc.

6- DX: BFS (although from my understanding true dysphagia is not associated with BFS. The question was ignored when i asked.)

any insight or clarity on any of this would be appreciated only if possibly please. I know you cannot Dx me but you would have a better overall sense then I do.

Lastly, I wrote to my NM1 for Dec 1 follow up that taken as a whole dysphagia, h reflex missed latency, decrement (and coincidental soreness) , New Hyperreflexia and some recruitment, taken together, did not seem to fit BFS. Please correct me if you believe I’m mistaken.

believe me please, I’m not trying to chase a Al Dx, but I believe things should add up. These issues together don’t point to BFS. And if not BFS and not AL what is the differential diagnosis I will ask.

thank you very much as always And sorry to bother.

AJ
 
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Nikki J

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1 a comment of hyperreflexia is vague but sounds like it was generalized which would be non worrisome. Reflexes are somewhat subjective and can vary especially if one is anxious. not to worry

2 also vague but apparently some isolated finding in one muscle ALS has a specific pattern and is widespread Not to worry
3No comment

4 any ncs issue ( and it sounds minimal) would be unrelated to ALS. Ditto rns ( though apparently your finding was clinically insignificant) not a diagnostic ALS test. Is used for MG

5 great

6 no comment

let us know after 12/8. Please no more posts until then.
 

Txu4urtime

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Sincere Thank you Nikki. Truly. Means a lot.

i had read in studies that RNS decrement was often seen in ALS patients so it Got me wondering. Thanks for comforting response

appointment is now 12/1.

no posts until then. Heartfelt thanks
 
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Nikki J

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I should have said more clearly rns is not a diagnostic test for ALS. As you noted it has been looked at in research.

good luck on Tuesday
 
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