Could this be bulbar ALS?

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Txu4urtime

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Thank you Nikki for your well wishes. Very kind of you ❤️

You are a pillar of this forum
and a soothing guide to countless strangers who owe you tremendous gratitude, as do I.

it’s funny, you read my mind. I was hoping you’d address the recent RNS decrement research on ALS. And you did! Thank you for that.

It’s that very body of RNS decrement research findings on ALS , coupled with my own RNS decrement, progressive and highly noticeable dysphagia and new found recruitment that wasn’t there a month ago, that frankly have me- I won’t lie - unnerved to say the least.

Especially that I have a loving and amazing 7 year son and we are inseparable. He is my world. We are each other’s worlds.

You aptly, as always and eloquently ,point out that RNS is not a diagnostic tool for ALS.

However, when I read the the ncbi nih and other reputable sources say “ Conclusions: Decremental responses in the RNS are commonly observed in ALS patients.”, again I won’t lie, I’m unnerved.

I do want to be honest about my fears given what appears to be a fair number of curious indicators.

I will take your well Wishes with me Tuesday Nikki. Thank you again for your clarification.

Message you 12/1 and I’ll send unnamed report And summary when ready and I thank you again in advance for that.

until then ...
AJ
 

Clearwater AL

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Txu4urtime... you have read countless Threads, extensive research and
have managed to ramble this Thread on for 3 pages.

One would get the impression you actually desire a diagnosis of ALS.

You wrote to Nikki...

"Message you 12/1 and I’ll send unnamed report And summary when ready."

After three pages and numerous ALS knowledgeable have not seen ALS
in most of your posts.

Ok, for all that have followed this 3 page Thread.... don't send it to Nikki
in a PM. Post the summary/conclusion at the bottom of the report here
on this third page. Being that any personal identification will be left off we'll
have to trust it's yours.

Until then lets have some recall, your post...

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.

Maybe I missed it... is the 12/1 appointment for another EMG? Number 4?

(No need to reply)

I hope the tremendous amount of time you have spent researching
your fears... for your sake, it will be written off as a waste of time you
could have given to your son. Hopefully you will finally be able to move
on with your life.
 
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Txu4urtime

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I understand AL. You’re completely right. And I’m sorry. I apologize to mods and members.

Knowing this forum better Now I would have kept it more concise. My thread has been very long and I’m sorry For Any rambling. I’d redo it if I could.

You’ve all been very gracious and I cant imagine the effort it takes and don’t want to abuse of that kindness

I’m not chasing it AL, believe me.

I feel deeply for Pals and cals. To be honest I have even deeper respect and compassion now that my eyes are truly open

and I have a 7 year old. I can’t leave him Al. The last thing I want is to be chasing an illness.

But I know my body (not my mind) is telling me something is way off

both my trusted GI
and ENT have insisted dysphagia is Neuro issue. Yet neuros have totally ignored it. Completely.

I want to believe It’s bfs , but I’m now eating puréed food after only 4 months And clearing my throat as loud as a race car engine most of the day. And can’t drink water well or manage saliva.etc.

that’s the sincere plain truth. . And That’s not normal. And that doesn’t sound remotely like BFS.

I’m praying it’s something Curable or treatable as you Kindly said in your Previous Post, but neuros offer no explanation.

i Will post to all as intended and I assure you I’m as trustworthy as they come. Born and raised that way

aa for above summary, I corrected Neuro 3 today. Neuro rambled and scrambled. I now know there were no fascs but Hyperreflexia and some recruitment of tibia notes.

thank you Al for raising the fact that my thread is too long. You’re right and I’m sorry

I’ll keep it to 12/1 and reports and minimal conversation

Regards
AJ
 

Bestfriends14

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That's wise waiting to post until after you get your report. We look forward to seeing your 4th EMG clearing you of ALS. Let's hope that you'll finally believe it. No ALS symptoms confirmed by clinical exam, EMG, and lack of symptoms should finally reassure you. Until then, take good care and stay safe.
 

Clearwater AL

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AJ, I'll just say this... you so far have been fortunate.

Many times in the past the Moderators have closed out
Threads after they have posted a 2nd or 3rd clean EMG.

Ok, we're are going to stand by for your 4th EMG.

Again, I hope it will be an EMG that will let you move
on with your life free of ALS. And for your son.

If you can post a photo shot of the summary/conclusion
being that you show capable computer skills.. And or post
the entire report.

Again, I hope this one sets you free.
 

Txu4urtime

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Thank mods and Al for your patience. Im grateful. I will post entire report.
 

Txu4urtime

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Hi everyone, thank you again for your patience and support.

Summary:
- NM says no ALS
- allow me please to send you report when I receive it
- NM did two triceps, upper trap, 1 hamstring, and tongue (wasn’t so bad)

Brief Notes if interested:

-
NM did tongue needle. She said it would rule out mainly slurring not dysphagia issues. Kinda bummed me out as I thought it would be definitive.

- when needling one of my symptomatic (easily fatigued) June 25 onset hamstrings, I/muscle was very relaxed yet the needle made noise in the relaxed position. She tried different positions and it still made noise on relaxation. I relaxed. Wasn’t crazy about that. But NM made nothing of it.

- No other muscle made noise on relaxation

- reflexes normal

- sending me for bloodwork for MG but admitted I fit only a a couple Symptoms: dysphasia and muscle fatigue. She admitted my other symptoms don’t fit MG (Myoclonus jerks, internal body tremors).

thank you all again for support and I’ll send full unnamed report when I get it please.

Ps. Hope they find out soon what is going on because last couple of days having hard time swallowing my saliva/mucus. Stays in throat.
 

Nikki J

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Told no ALS yay! Believe it. Accept it. Move on.
the doctor can tell the difference between artifact ( which the noise clearly was) and pathology which you were told it was not. Let it go.

guess what? Those symptoms that don’t fit mg? they don’t fit ALS either.

good luck in finding the answer It isn’t here. Lucky you

closing thread. We don’t need to see the report you were already given the answer by your specialist. No ALS
 
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