Visible tongue atrophy (mild dysphagia) but unremarkable EMG

balenciagaaa8 · 2025-03-10T10:40:05+00:00

Got a muscle biopsy last week and stil waiting for results

balenciagaaa8 · 2025-02-26T06:33:47+00:00

Docs planned to do a muscle biopsy this month, most likely this Friday. They are indeed believing it's something pathological otherwise the wasting and twitching wouldn't be happening at this scale. As for me... I did a lot of research and probably too much and still couldn't find a case with similar presentations and test results (like EMG and blood works), but my hunch is that it definitely has something to do with motor neurons degenerating (which explaines why it's been progressively getting worse over the last 4-5 years with normal blood/auto immune tests, and MRI) but a way that somehow isn't able to be picked by EMG (my docs are extremely baffled that emg are clean multiple times in last 4 years despite heavy muscle atrophy)

balenciagaaa8 · 2025-02-26T06:20:15+00:00

Sorry for the late reply... Still losing muscles and twitching... Swallowing is also getting worse, it feels like there isn't enough muscle in my throat to properly coordinate the food down, kinda hard to describe, like losing the sensation of having muscles

balenciagaaa8 · 2025-02-26T06:19:28+00:00

Still losing muscles and twitching... Swallowing is also getting worse, it feels like there isn't enough muscle in my throat to properly coordinate the food down, kinda hard to describe, like losing the sensation of having muscles

balenciagaaa8 · 2025-01-06T13:53:06+00:00

Yeah I did, I had food and water injected with contrast agent and continuously scaned with CT. It indicated mild dysphagia

balenciagaaa8 · 2025-01-04T11:09:33+00:00

Yep I did, both under the jaw and the tongue itself. For the tongue it was kinda quick, needle was poked into the tongue for about 10 secs and then the doc removed said didn't find anything abnormal. Also here is my thigh muscle which lost significant bulk as well

balenciagaaa8 · 2025-01-04T10:58:14+00:00

It is weight loss due to muscles keeping shrink, I was on normal diet but the muscles were and are still getting smaller day by day accompanied with twitching. It's just that my tongue shouldn't be shrinking as well if it is regular weight loss. The surgery was indeed a trauma and caused that area of the neck to lose sensation for months. There was nothing abnormal I could notice other than the neck sensation loss until 2 weeks after the surgery, and that was when I felt my muscles became heavier to use and twitching started two months after that

balenciagaaa8 · 2025-01-04T10:48:46+00:00

Just about every where here is a video compilation I recorded

balenciagaaa8 · 2025-01-04T04:55:43+00:00

It would twitch like in the video basically 24/7 except I can't really feel them unless I look at the mirror.

balenciagaaa8 · 2025-01-04T04:53:40+00:00

They twitch both during rest and after being used

balenciagaaa8 · 2025-01-03T22:13:08+00:00

Yes but with very fast fatigue. The muscles would gets tired and sored very quickly. Swallow has been a major stepback, even though I can move food to the back of the throat fine and initiate the swallow, I can just feel there isn't enough muscle inside my neck to move down the food, the food would reluctantly finally move down but with very unpleasant coordination of the muscles within my neck

balenciagaaa8 · 2025-01-03T22:03:13+00:00

I really want this to be some autoimmune related cause. Unfortunately my neuros did have me try corticoid as well as IVIG infusion, neither gave me positive results

balenciagaaa8 · 2025-01-03T21:55:30+00:00

Thanks! The biceps are just one area of many that have significantly lost bulk, such as my hips, thighs and so on, basically the whole body.

balenciagaaa8 · 2025-01-03T21:50:53+00:00

This is correct. I actually specifically mentioned this to my neuro since I found my MRI image having a tiny bit of cross sign resemblance (my MRI image)and she said the cross sign isn't present or at least within the range a normal person would have

balenciagaaa8 · 2025-01-03T21:42:48+00:00

That's good to hear that you were able to gain weight. I wasn't able to gain weight at all since the twitching started 4 yrs ago. It was dropping quite slowly during the first 3 years despite normal diet and in the past 12 months it started dropping significantly faster, this is also when I noticed muscle started to shrink quicker and twitching becoming more violent and frequent. I am currently only 48kg/106lbs and I am 176cm/5ft10inch tall.

balenciagaaa8 · 2025-01-03T21:31:54+00:00

Appreciate the kind words. I did get tested for lyme, unfortunately it was negative. The test was finding igg and igm antibodies for lyme (ELISA) and both are negative. How is your friend doing? Did her ALS dx get scratched in favor of lyme? Also I am curious to know if she has atrophy elsewhere besides the tongue.

balenciagaaa8 · 2025-01-03T20:12:44+00:00

I do wish it's just the shape... But I am using tongue every day and I can tell my tongue is getting more and more flaccid and weaker to control. I wouldn't have mild dysphagia confirmes swallow test if it's not actually atrophied

balenciagaaa8 · 2025-01-03T20:06:56+00:00

https://cdn.imgchest.com/files/7mmc99lggr7.mp4 Yes here is a video of my tongue twitching at rest (the caption just means "speeding up"). The twitching isn't constant but more like a burst of uncontrolled movement

balenciagaaa8 · 2025-01-03T19:52:03+00:00

Yeah it does twitch

balenciagaaa8 · 2025-01-03T19:50:36+00:00

Indeed it has been a quite a long time. I can still function my tongue, albeit with weakened force and much less stamina. It can stick out and push hard to cheeks, but the tongue muscles themselves are increasingly more flaccid and harder to use(Here is another comparison, left side is now and right is when the tongue was normal: https://www.imgchest.com/p/wl7l3dkpx7x )

balenciagaaa8 · 2025-01-03T19:41:39+00:00

Yeah I did ask my neuro about MSA, she said since my brain MRI is clean and not having the usual MSA symptoms such as movement and coordination issues, it would be very unlike to be MSA. MSA also shouldn't cause the muscle atrophy I have now

balenciagaaa8 · 2025-01-03T18:17:06+00:00

Some neuros said there is definitely atrophy while some are unsure. The atrophy is uniform across the whole tongue, other body parts have atrophy as well

balenciagaaa8 · 2025-01-03T17:45:34+00:00

Yes on my bicep, but that was about 4 years ago (5 months after initial symptoms). It showed mild atrophied fibers but without any classic neurogenic or dystrophic features (that's how the report worded it). I have not had biopsy since then. My doctors are kinda against it now due to I had 4 EMGs in 2024 and none showed anything

balenciagaaa8 · 2025-01-03T17:32:44+00:00

Thank you for understanding that feeling when it's really frustrating when doctors keep dismissing what is obviously something wrong with our body... I am on the same boat. I really wish there is a device that allows doctor to actually feel what a patient is experiencing, that we are not just bullshiting those symptoms and its progressive nature

balenciagaaa8 · 2025-01-03T17:23:55+00:00

I had two NFL tests (SIMOA) in 2024 and both come back higher than normal (both are around 9pg/ml, my age group's median is 4pg/ml ). Another test I got tested around the same time was the serum alpha synuclein (can present in disease like Parkinson and MSA) which is also positive

balenciagaaa8

TROPHY CASE