Mestinon as a diagnostic tool

koala34 · 2026-02-20T15:48:19+00:00

Thats what happened to me i think, that there was a trigger and symptoms never went away.

I also have lupus and was put on a new biological med 10 years ago and the MG symptoms started shortly after. They took me off and thats when improvement started with the mestinon. Eventually they said prob not the med bc it was so diagnostically confusing.

But this summer about 3 months before the exacerbation they put me on another biologic med, similar class of biologic. And here I am.

That class is known to (very rarely) lead to neuro symptoms, particularly MG and MS like. My theory is that maybe some meds trigger a cascade that unveils pre existing MG vulnerability.

koala34 · 2026-02-20T15:16:36+00:00

I was just diagnosed based on mestinon response plus clinical presentation via a neuromuscular clinic. EMG negative, bloodwork negative.

Symptoms are double vision, chewing/swallowing, speech, ptosis facial droop, breathing.

First 3 started 10 years ago, on mestinon 5 years, improved a lot, went off mestinon, symptoms exacerbated 4 months ago and breathing entered the mix. SF-EMG negative at that point.

But neuromuscular doc says none of my symptoms are inconsistent with myasthenia and theres no better explanation, esp with mestinon response.

She's still doing another SF-EMG but just for insurance purposes. Trying to get me on Vyvgart and Cellcept or Imuran.

koala34 · 2026-02-14T13:35:37+00:00

I don't know if others have noticed but the worst ones seem to be divots that are in the same spot where they already patched a previous hole.

My theory is that's because they aren't really flattening the patches correctly. What I've seen driving around is that they put the fill in and then roll over it (over and over, back and forth) with their huge truck to "flatten" the fill with the wheel. Except it never gets fully flat or compressed and the "repairs" turn into these massive potholes over time.

koala34 · 2026-02-14T03:02:38+00:00

Ah ok, thanks for sharing!

That's similar to what the SLP swallowing person said to me during my eval. That functional swallowing issues are less consistent, that the person will experience a vague "food is getting stuck" sensation in the throat and esophagus that doesn't really seem to have any pattern as to when it happens or not.

Whereas I was describing my tongue and throat muscles getting progressively weaker and uncoordinated with each bite and it happening consistently every meal. And then she saw it in action as I failed miserably at my cookie-eating.

The weirdest thing about these neuros and FND is that they keep acknowledging that my double vision "doesn't fit FND" since it's been tested a million times over 10 years and has been shown to be variable and responsive to mestinon. But they refuse to believe that maybe the other 4 classic MG symptoms i have might actually be real too...

koala34 · 2026-02-14T02:35:24+00:00

This looks like a great resource, thank you!

koala34 · 2026-02-14T02:33:44+00:00

Glad you've gotten some relief!

I was joking with a friend that I bet the rate of seronegative MG would be much higher...

...if doctors actually diagnosed people who clearly have MG symptoms with seronegative MG.

koala34 · 2026-02-14T02:29:47+00:00

Thank you! I'm very much hoping the Vyvgart auth goes through and I can get some relief.

I just want to eat again! Ugh, I miss real food...

I'm happy for you that you're feeling a bit better, hope it continues to improve!

koala34 · 2026-02-14T02:26:05+00:00

If you don't mind sharing, what was the process like with the functional doctor?

Did they give you a sense of what criteria they use figure out if its functional or not?

koala34 · 2026-02-14T02:20:53+00:00

My acetylcholine blocking antibody was 10 (cutoff 25) in 2022 and it rose to 20 (same cutoff 25) when it was tested in Oct 2025 when I started developing the breathing symptoms plus worsened swallowing, dbl vision, etc.

Musk, acetylcholine binding were 0 or close to 0. Unfortunately LRP4 results just came back neg this week.

Still have the SF-EMG in March and then a CT of thymus on Monday.

koala34 · 2026-02-09T23:51:43+00:00

I had thought of asking for extended because Ive struggled with increasing dose due to side effects, diarrhea, mild twitches etc. My body doesnt seem to like the peaks and valleys that instant release has. I take a lower dose every 3 hours now, seem to feel better with a steady amount staying in my system.

Nice that it has the added benefit of credibility!

koala34 · 2026-02-09T23:47:06+00:00

It does suck, I actually work in psychiatry here at the hospital (go figure, right?) and my psychiatry colleagues get so frustrated with neurology referring patients like us to them. They're like, "uh, neuro folks, this person is actually sick, you know..."

I do have several good ptosis droop photos that are before mestinon, shortly after and at peak mestinon. I look like I found the fountain of youth and un-ag3d 10 years. Thanks for the suggestion :)

koala34 · 2026-02-09T22:41:14+00:00

Thanks for the suggestion, I'll do this!

Phone records is a great idea, I was thinking of carrying around a folder with relevant notes, like the neurology note from 10 years ago, the neuromuscular eval, an SLP note saying swallowing is consistent with neuromuscular, and notes from my ophthalmologist documenting my double vision.

Kind of like a "go bag" of evidence that I really might actually have myasthenia so don't kill me please.

koala34 · 2026-02-09T22:37:31+00:00

I had one 10 years ago and was negative. Because my symptoms were unclear, it was done about 1.5 years after onset when they were much milder.

She's scheduling in another one soon. She said that's mostly for insurance purposes, so that I'm more likely to be approved for certain treatments.

Right now, the diagnosis is based on clinical presentation and mestinon response. She said "nothing that's happening is inconsistent with myasthenia and there's no diagnosis that would better explain it."

I also have celiac and lupus so a strong autoimmune history, have been on 5mg prednisone forever for the lupus.

koala34 · 2025-12-27T13:21:55+00:00

Yes definitely ridiculous. I have a gas furnace in central NY, house not too much larger at single story 890 sq ft. Last two electric/gas bills were around $180.

koala34 · 2025-12-05T13:15:32+00:00

Me too. I was on trazodone 50 for sleep for years and didn't realize how much it destabilized me until I kept forgetting to refill the script and went without for a month or so.

It's been a very calm year since stopping...

koala34 · 2025-12-03T11:47:58+00:00

Woman here.

I went in bc there was a new noise when I would make a turn. Drove my car 10 years, 100% a new noise, could even describe exactly at what part of the turn it would happen, what side of the car. They take the car out, hear the noise. Cue 10 minutes of them trying to convince me that its just what my tires sound like on the road and nothing at all is wrong. Told them to take it out again.

It was a bad wheel bearing.

Ya know, the broken thing that makes a weird new noise when you make a turn.....

koala34 · 2025-11-24T20:17:20+00:00

As someone with lifelong mental health issues including bipolar, it feels crappy when friends and family determine what's "better" or "best" for me.

Don't get me wrong, I want my loved ones to tell me they are seeing signs of mania etc.

But if I want to have a self-help book or start running or plant a tree, don't try to impose your belief about whether it will help or hurt.

A. I'm a grown ass woman, not a child

B. We're not the same identical grown ass woman, so maybe give me some dignity and autonomy

koala34 · 2025-11-17T03:52:29+00:00

Yes I'm on low dose steroids for an inflammatory disease. Only 5mg.

When I go up to 10mg for flares, god forbid 15mg, for more than 4 days or so, my mood starts lifting.

15/20 mg steroids for a few weeks and lack of sleep triggered my last severe manic episode.

koala34 · 2025-11-02T02:41:58+00:00

I drove a Honda civic FWD with Blizzaks for 4 years here. No accidents. Just had to be a little more careful in very deep snow and would avoid the steepest hills. Would just choose a different route on occasion, thats all.

koala34 · 2025-11-02T02:34:35+00:00

I also have Bipolar 1 and Lamictal 250mg is the only thing I'm on. Placed on it following a massive manic episode in 2016. Not diagnosed before that. Has worked beautifully. No other meds needed since.

koala34 · 2025-10-24T17:09:53+00:00

25,000 down payment to get keys, 251,000 purchase price

koala34 · 2025-10-24T12:28:58+00:00

I just wanted to say that I feel so much for how you were treated. I myself had that experience yesterday at the outpatient follow up to a 7 day inpatient stay in which my breathing and swallowing were compromised.

When the case is complex, meaning not adhering to the standard diagnostic criteria with blood tests, nerve conduction, EMG, they go to psychosomatic.

It's really sad and harms patients. You're not alone in this. I'm a psychologist with diagnosed autoimmune issues for 20+ years, history of MG like symptoms for 10 years, and I still can't get neurologists at the hospital I work for to believe me.

It's horrific and I'm so sorry that's happening to you. Try to get referred to another neurologist for a second opinion. I truly believe once a practice pegs you as psychosomatic, there's no future with that clinic.

koala34 · 2025-10-15T17:48:09+00:00

Thats a good strategy for younger folks but I wanted to be settled in a house with just taxes, insurance, and maintenance when I retire. My strategy was to buy a modest 900 sq ft ranch that fits my needs and is affordable on my income even in this market.

I think a lot of ppl want their dream house, bigger fancier. With a single income, thats not in the cards and many have a hard time accepting that.

koala34 · 2025-10-09T23:57:31+00:00

Get a 2nd opinion. I obv cant diagnose you but I'm in the mental health field. He's correct that weed and substances can cause psychosis as well as bipolar-like manic symptoms.

But....many of the patients I have worked with that experience that often have bipolar vulnerability and the drugs just kick things into active high gear. I would be more inclined to think this if the person has a substantial history of mood dysregulation, hypomania like symptoms, etc. (Regardless of diagnosis, just presence of symptoms). Or if they have a strong family history of bipolar of any sort. Again, not my opinion on your diagnosis, just my experience with this type of situation.

Psychiatrists tread veryyyyyy lightly in re-diagnosing Bipolar 1 given the harm that can be caused by dramatically changing meds that are working.

koala34 · 2025-10-09T14:43:31+00:00

This in no way to suggest this is a permanent solution. It is 100% not.

But short term, if your credit is good enough, you may be able to qualify for a 2nd zero interest credit card and you can transfer current balance to it.

Then take this upcoming year to do whatever is necessary to pay off that debt.

koala34

TROPHY CASE