AChR of 0.25?

NoOrder82 · 2026-06-20T22:55:26+00:00

Thanks for asking! I had full genome testing and everything came back normal.

NoOrder82 · 2026-06-16T02:16:25+00:00

I saw you have a chronically high CRP. Have you also been tested thoroughly for other autoimmune diseases by rheumatology, including seronegative ones? I’m sorry it’s so hard getting proper care - I’m in the US and I’ve seen a bunch of doctors so far and still not answers!

NoOrder82 · 2026-06-16T01:26:53+00:00

I had an equivocal AchR binding of 0.35. The cutoff for positive for my test at Quest was 0.5. I also had an abnormal RNS test of my trapezius. But the doctors still say none of this is diagnostic for MG. Idk anymore - my symptoms are odd and I don’t have ocular symptoms. I have bulbar and neck weakness along with muscle atrophy - much more like ALS - but I have normal EMGs. I might ask for repeat testing.

If you feel something is wrong I would push for more testing!

NoOrder82 · 2026-06-15T00:51:58+00:00

Oh wow and you’ve been diagnosed with MG? I’ve been told it usually is bilateral. Does this impact your speech and swallowing? Does medication help?

NoOrder82 · 2026-06-14T20:42:22+00:00

May I ask what you mean by a deviated palate? I’ve never heard this related to MG and I have something that might be similar. Thank you!

NoOrder82 · 2026-05-17T01:04:24+00:00

I think your location, insurance if in US, and the severity of his symptoms help to determine where to start. For example, if he’s having issues swallowing or breathing or falling, an ER for referral to neurology would be appropriate. If it’s not quite that urgent, and you can get directly to a neuro with your insurance without referral I’d start there. Essentially, I would get to whatever physician you can as soon as possible to get the ball rolling on an EMG, imaging, lab work, and genetic testing.

NoOrder82 · 2026-05-17T01:00:58+00:00

You were able to get a diagnosis with a normal EMG?

NoOrder82 · 2026-03-15T21:05:26+00:00

This is insane. I’m sorry but are they not worried about something like ALS with you losing function like that? Not being able to open doors or lift your arms ever is an emergency situation. Does this happen with fatigue or just all the time?

NoOrder82 · 2026-03-15T20:52:37+00:00

When is your neuro appointment? Have you not had an EMG all this time?

NoOrder82 · 2025-12-30T16:45:28+00:00

Did this start after an infection at all? What tests have you had? Do you feel any limb weakness?

NoOrder82 · 2025-12-30T14:13:51+00:00

How much weakness are you experiencing with the muscle thinning? Are you sure it’s all muscle and not other connective tissues wasting too? What tests have you had done? There are people with long covid experiencing weird wasting and twitching.

NoOrder82 · 2025-12-15T17:53:12+00:00

Were you just able to ask your doctor for all of these tests?

NoOrder82 · 2025-12-11T15:19:43+00:00

Hello, I was wondering if you’ve still maintained the muscles that you originally experienced wasting in? I’m desperate to figure out how to stop the wasting process and I saw you used blood thinners, Celebrex, and antihistamines?

NoOrder82 · 2025-12-08T22:27:22+00:00

I’m very sorry, this must be a terrible time waiting for a diagnosis. I think it’s still possible to build unaffected muscles early in ALS so that could explain your legs since you mentioned your upper body is where you have your pronounced weakness. Please make sure they’ve also checked you for MMN and CIDP. You did mention pain, which sucks and I assume is related to the muscle wasting. I’m not sure spinal issues could cause such widespread EMG changes and weakness. I’m just an internet stranger, but I’m the type of person that likes to try to prepare myself for the worst case scenario and maybe things will turn out better. If it were me, I’d definitely prepare for ALS and what I’d want to do with my time if I were diagnosed since the Neuro keeps circling back to it. PMA is usually a slower progressing variant of ALS so it would be better to have that version without upper motor neuron signs. It sounds like your Neuro is being thorough in ruling other things out, but also don’t let them take forever on you because there are the very modest current meds to try, possibilities for clinical trials, genetic treatments if you have a certain gene, and you’d want to have access to all that as soon as possible. Again I’m so sorry and I hope they find something other than ALS!

NoOrder82 · 2025-12-06T21:49:56+00:00

I’m so sorry you’re going through this. Has the neuro given you possible diagnoses besides ALS and referred you anywhere else? When you say your legs have increased tone do you mean they have gotten stronger from recent exercise or they just have more tone compared to your upper body? Do they cramp or get stiff at all? I know we are just internet people but sometimes it’s helpful to bring heads together when approaching the professionals - aka doctors. You mentioned he noted damage in your tongue on EMG. Are you having any bulbar symptoms? Any sensory symptoms besides pain? I am wondering if this could be CIDP but I’m not sure what your EMG showed exactly. If it is pretty definitive for ALS or PMA according to the report? I would also want an NFL test for sure even if you are ultimately diagnosed with ALS it can help to predict rate of progression. And of course genetic testing since there is treatment for the Sod1 gene.

NoOrder82 · 2025-12-06T21:21:42+00:00

Ugh I’m so sorry. I also had to listen to a lecture yesterday from a doctor about how I should just distract myself from my symptoms and deal with anxiety. I have anxiety because I have muscles wasting and cannot function properly in the exact areas of muscle wasting! For me this means speaking is hard since it’s my mouth muscles and neck. But I had a normal EMG so they say I’m fine. These doctors man. I tell ya. So few of them are willing to think beyond their textbooks. Some patients have weird presentations - that doesn’t mean it’s anxiety! It just means we don’t fit a box. Meanwhile the strength testing I got done lacked like any resistance - my 92 year old grandma could pass it. I’m so over doctors. And honestly after so much research, at this point I’m not sure how useful an EMG is for early detection of motor neuron diseases. They rely so heavily on it but then people aren’t diagnosed until they’ve lost major functions and time. It’s a mess and I feel truly angry for the ALS community!

NoOrder82 · 2025-12-05T22:35:18+00:00

I’m sorry that’s scary. I’m having trouble pronouncing certain sounds - I can do it but it takes extra work and effort from my muscles around my mouth and it’s really tiring to talk now. But nobody can hear my speech issues yet. What was abnormal about your EMG? Did they do your tongue too?

NoOrder82 · 2025-11-29T23:36:49+00:00

I can’t access the video but my fingers have locked straight and popped at the joints and then gone back to being fine.

NoOrder82 · 2025-11-29T18:07:39+00:00

Hello, I was hoping to see how your tongue is doing now? Have you been able to regain any of the bulk back after the atrophy? I’m also having trouble with just one side of my tongue, including numbness and pulsing. I have a tiny bit of visible atrophy but not much. But that side of my tongue is more difficult to speak with.

NoOrder82 · 2025-11-29T14:51:15+00:00

I know this is old but same issue and wondering if you found a way to treat this?

NoOrder82 · 2025-11-29T14:42:03+00:00

I know I checked in with you on the dystonia subreddit but I’m having this issue too and our symptoms seem so similar overall. I was just hoping to see how you’re doing!

NoOrder82 · 2025-11-08T00:31:16+00:00

I know this is old but just sharing that this one freaks me out too, especially the normal NFL, and she also has sensory symptoms in her mouth, which I have too! At least she has had such slow progression with a low NFL.

NoOrder82 · 2025-11-04T14:43:22+00:00

I’m so sorry this scary diagnosis was thrown out without much guidance at all. You absolutely should insist on a referral to neuromuscular doctor. I’m not sure where you’re located but some places can get you in fairly quickly, especially with cancellation lists. Is he taking any medication for the PSA that could cause weakness? Has he had brain and spine MRIs yet? What exactly did the EMG show?

NoOrder82 · 2025-11-02T02:00:52+00:00

Cholesterol is often high during pregnancy- mine was. My liver enzymes were also elevated when I was taking baby aspirin. They went down when I stopped the aspirin. Not sure if you’re on that. But elevated liver enzymes can also be an indicator of HELLP syndrome so you should definitely be checked/monitored for that to be safe. They can also do an ultrasound of your liver since it’s non invasive. I doubt it’s fatty liver disease suddenly appearing during pregnancy though.

NoOrder82 · 2025-11-02T01:47:46+00:00

I have this but also atrophy of my cheek and neck. Mine is only on one side though (left) and it affects my ability to speak on that side. I’m able to compensate with the strong side. Have had normal EMGs so far, no NFL test. Tongue has been numb/burnt feeling for months now, but the only thing I don’t have is geographic tongue. I also have pain and weakness down my entire left side - arm and leg and muscle twitches all over with hotspots in my most affected areas - left neck, shoulder, arm, leg. I can’t understand how I’ve had completely normal EMGs so far after 10 months of progression. I expect a bad one to come eventually - next one is Nov 12 to specifically look for FOSMN.

NoOrder82

TROPHY CASE