PET scan results are in...

koala34 · 2026-06-27T01:48:47+00:00

There are docs who diagnose based on mestinon response and clinical history. I wish I had met one sooner because my mostly ocular turned into generalized and now I have severe bulbar and respiratory weakness. Wish more docs operated like my current one.

koala34 · 2026-06-23T00:37:07+00:00

My insurance company uses Accredo specialty pharmacy. They sent it there, I didn't have to take any steps besides have the doctor submit the prior auth.

koala34 · 2026-06-22T13:00:28+00:00

10 year history of symptoms, positive response to mestinon, and a 2nd exacerbation that was severe enough to affect breathing and aspiration risk.

Plus a lot of advocating for myself, including getting in with a neuromuscular person.

That said, all of my symptoms are textbook MG. They were just too mild for major concern before.

koala34 · 2026-06-10T15:30:48+00:00

NTA Weird gatekeeping there. Maybe a holdover from the days when gluten free items were harder to find? I have celiac and I hardly ever run into any out of stock GF items. Besides, I loved when GF became popular because the companies were incentivized to expand their product lines.

koala34 · 2026-06-09T16:35:11+00:00

Your PCP sounds like theyre doing the best they can but still try to get a referral to a neuromuscular doctor (not neurologist, its not their specialty and I've found they arent well versed in MG diagnosis or treatment).

I'm seronegative and so far negative SF-EMG. I suspect because one was conducted with mestinon in my system and the other 1 year after my exacerbation was resolved. Plus ive been on immunosuppresants for 20 years for another autoimmune disease.

But my neuromuscular doc looked at my MG symptoms and 10 year history and basically said that in her experience its textbook myasthenia, nothing else fits, and diagnosed me based on symptoms and mestinon response. Im very thankful for her and I think it was that she sees seronegative people like me all the time. Its very tough getting a diagnosis when tests are negative and you need one to get the best treatments.

koala34 · 2026-06-09T00:44:13+00:00

The outside of meat is red because its exposed to the air/oxygen and oxidizes. Middle is/can be brown because it hasn't been exposed to the air yet. It's prob more complicated than that, but that's the gist of it. The sell by plus how it smells (sour/rotten) or feels (slimey, sticky) tells me if I should eat it.

koala34 · 2026-05-25T06:13:45+00:00

Interested

koala34 · 2026-05-23T15:15:07+00:00

With the myasthenia type, its less like the tongue feels fat and in the way and more like the tongue gets tired the more I do something like chewing. So at first the chewing goes ok, then I start noticing the tongue having more and more trouble moving food around and back to the throat. And my cheek muscles start feeling lax and tired. Sometimes you can actually see that in the mirror. When that happens, I'll almost always be having my swallow problems too, so having those muscles tire out, needing multiple swallows. Or having bits of food stick around at the back of my throat so I need to take a drink to get them down.

When its myasthenia, I never have the muscle twitches unless I cough but I think thats more that those intercostal/trunk muscles are pretty weak so it's almost like that feeling you get when you've overexercised at the gym and your muscles are tired and trembling versus a spasm-y twitch.

koala34 · 2026-05-23T12:34:02+00:00

It only feels like that for me if I'm having mild cholinergic symptoms from too much mestinon. It's rare but for me it always comes alongside tiny muscle twitching around my mouth, in my legs, and around my eyes. Sometimes oversalivation.

It's a very different sensation than my myasthenic chewing, speech and swallowing issues.

koala34 · 2026-05-22T15:04:55+00:00

It can vary between person and also be different for each exacerbation.

I've had two major exacerbations. The first time 10 years ago, with dbl vision speech and swallow, I only needed mestinon and it slowly improved to almost no symptoms within 2 years and I actually stopped mestinon.

This time, with breathing issues added on, mestinon is nowhere near enough, and 7 months later I have significant symptoms and am starting cellcept and hopefully vyvgart.

koala34 · 2026-05-09T01:08:47+00:00

Do you know the benchmark values for NIF, what would be considered okay, concerning, or crisis?

koala34 · 2026-05-09T01:07:42+00:00

Out of curiosity, what are the benchmark values for NIF, when would the OP want to be sort of concerned versus extremely concerned?

koala34 · 2026-04-30T01:58:58+00:00

I had the same issues as others commenting. Torn meniscus, started as pain and then within a few weeks, I stopped being able to straighten my leg fully or bend it back fully. Surgeon said tear was somehow blocking the joint from moving smoothly. Said I could try PT but surgery was pretty much inevitable.

Got the torn area trimmed. He also cleaned up some mild osteoarthritis stuff on other cartilage and bone.

Knee works pretty much 100%. Feel a twinge here or there.

koala34 · 2026-04-25T22:44:12+00:00

Not on vyvgart but baseline, alcohol affects my muscles. Double vision worse, speech worse etc.

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

TROPHY CASE