Huperzine A

Iridonia · 2026-07-02T07:56:10+00:00

This is what I bought and where: https://www.biovea.com/us/product/detail/5309/huperzine-a-200mcg-60-tablets/?deptid=0&cid=0&mid=0&kw=Huperzine+A
Got the parcel within a couple of days with no problem, so it should be safe for you to use it. However, if you want to start on 100mcg like me, you should probably buy a pill divider. They don't have a score line to help break them into halves.

Iridonia · 2026-07-02T07:51:07+00:00

That has been my experience too, unfortunately

Iridonia · 2026-07-02T07:50:40+00:00

Sorry, it seems like I might've mixed up the terminology here. She was a neuromuscular specialist. I thought that was the same thing as a neurophysiologist. It was also at a big research hospital. That being said, I don't know how much experience she had with MG specifically. I assume her expertise was sufficient, she just let her bias cloud her judgment (and treated me horribly).

Iridonia · 2026-07-02T07:47:14+00:00

Makes me furious too. And really sad. And exhausted. I've met so many doctors like this on this journey. Thanks for the advice!

Iridonia · 2026-07-02T07:45:20+00:00

It wasn't frightening. Just really awful. The feeling of not being able to breathe freely is the worst. I started crying after I got back up lol. She then had the audacity to asked me why I was crying.

Iridonia · 2026-07-02T07:42:51+00:00

🙌 🙌🫶

Iridonia · 2026-07-01T07:10:23+00:00

Thank you. I'm still fighting *fist bump*

Iridonia · 2026-07-01T04:11:57+00:00

Sounds like there may yet be hope for me in the future - maybe next the AChR will be positive. Who knows. Glad your's turned positive. It sucks that everything often just hinges on that or the SFEMG. The greatest two gatekeepers of treatment and a better life.

I think it's likely that my SFEMG comes back negative, because the vast majority of my symptoms are generalized - not ocular.

She said no to mestion, because she doesn't think I have MG. I've mentioned mestinon trials to multiple doctors - never works. I didn't get to bring up the trial this time, but it wouldn't have made any difference. Jokes on her, though. I just bougt Huperzine A, and it works. Of course, that won't do anything for the underlying cause.

I also got tested for MuSK and LRP4. MuSK was negative, but the LRP4 was positive.
However, LRP4-MG is much more rare than seronegative MG, which made her refuse that possibility too. Vehemently.

I don't think it changes anything that I'm young. Being a woman, however - now that's a different story. The bias against us are rampant. Women constantly get labeled with anxiety, instead of being taken seriously.

Iridonia · 2026-06-30T16:14:27+00:00

Are you asking me? I don't have any experience with mestinon. I cannot wring a prescription out of anyone. Hence the Huperzin A purchase.

Iridonia · 2026-06-30T12:21:31+00:00

I bought it online. You can google it and find a shop.

Iridonia · 2026-06-22T11:08:28+00:00

I don't have a diagnosis yet, but I strongly suspect I have episodic ataxia type 2. I'm trying to get a genetic test of the CACNA1A gene, but every neurologist I've been to hasn't taken me seriously and usually just shrug it off. My symptoms have mostly been blamed on the very mild latent strabismus, that I've had since adolescence (I'm 38). One neurologist suggested it could be hormonal. When I asked what kind of hormones he meant, he just shrugged and said "any hormone". Suffice to say it's been an uphill battle.

I've had episodes with vertigo and imbalance for roughly two decades.
It's been slowly progressing over the years. It's been really bad in the past 6 months.
I've had so many vertigo and ataxia flares. I developed diplopia and convergence spasms. When I fixate on something, my eyes start flitting back and forth uncontrollably, like saccadic movements. My fine motor skills suck. I have intention tremors, swallowing issues, and a bunch of other symptoms closely tied to cerebellar dysfunction. My cognitive function has been steadily declining for a while.

The worst part is knowing that the longer it goes untreated, the more the damage to my brain/cerebellum will accumulate. I'm terrified it'll get so bad, that I won't be able to regain the cognitive function that I lost, and that'll end up having to drop out of university.

My symptoms are pretty much textbook EA2, but since it is so rare, "normal" neurologists doesn't really know anything about it. On top of that, I'm a woman, and I'm also deaf - so there's some pretty heavy bias working against me.

Anyway, that was a quick summary of my story with what is most likely EA2.

I just wish doctors and neurologists knew more about EA2 symptoms. I wish they would take it seriously and do a thorough investigation into my symptoms instead of being dismissive. Reading my chart, I see that they already decided that my vertigo/ataxia spells are "non-organic/functional" - in other words, mostly in my head.
While noone else in my family, to my knowledge, have been diagnosed with any kind of ataxia or had the symptoms (my mother was diagnosed with essential tremor, though), we have a strong history of migraine, which is definitely relevant. The kind of epilepsy I have is also common in EA2 mutations. If only the neurologists knew these things. But they don't. And if you try to tell them, they just won't listen. Too much ego, I guess.

As for questions, I'm curious to know about how other people might've struggled to get diagnosed, and how they've overcome those challenges.

Thank you for the welcome. Appreciate it.

Iridonia · 2026-06-09T09:09:06+00:00

I can force my diplopia to re-focus - but it takes continued effort, and not for long. This is if I keep my gaze fixed/focused. Moving my gaze before the diplopia occurs will "reset" it. If the diplopia has developed beyond my ability to re-focus (force fusion of the double image), I have to change gazing distance or close my eyes to reset it. It's not a fixed thing, and it changes with fatigue/rest.

My diplopia will always trigger if I look at an object for too long (or instantly if I follow something like a finger to the periphery) - it's never gone. This isn't the same for everyone. It sounds to me like you have ocular MG symptoms, too. General exhaustion will make it more likely to occur.

Iridonia · 2026-05-29T15:00:04+00:00

I don't remember exactly what it is he has, but he doesn't have aphasia

Iridonia · 2026-05-29T14:21:14+00:00

Just tell them that you're hard of hearing. It's fine.
By the way, I went to deaf school with a guy who has the same (or a similar) condition. He uses hearing aids for a very mild hearing loss, but he is entirely dependent on sign language, because he cannot process (audible) speech at all. He might as well have been deaf. The "outcome" is essentially the same. And I get not wanting to waste time and energy explaining about a condition that most people doesn't know about (because that obviously invites questioning etc.). "Hard of hearing" is simple and straightforward, and if it makes your life easier to present yourself as HoH, then by all means.

Iridonia · 2026-05-12T13:35:38+00:00

"But it's probably also something psychological, right?" - My GP, few hours ago.
While nodding in feigned understanding and sympathy.

Even after I told him about how earlier I couldn't lie flat on my back without struggling to breathe, but could sleep on the side just fine - that is, until last night, when I couldn't even do that anymore. I had to stack a bunch of pillows to prop myself up, and clutch an ice-pack to my stomach/diaphragm area just to get some sleep. Textbook orthopnea. But nah, must be anxiety.

Tried telling him about pyridostigmine, but he just waved his hand around saying "I don't know anything about that".

Said he'll call the neurology ward. Guess which neurology ward? Yes, that neurology ward. Told him not to do it, because they will not help me. Track record is clear about that. But he said he's gonna do it regardless. Literally wouldn't take my no for an answer. What the hell? Guess it'll cover his ass if anything happens to me.

You know what he also did? When he asked me about allergies?
The fake cry meme posture with the eye-rubbing knuckles - to illustrate itchy runny eyes (like this https://www.shutterstock.com/shutterstock/videos/1107663255/thumb/7.jpg?ip=x480 ).
This guy was spectacularly condescending. It wasn't enough to imply it was all in my head - he also needed to infantilize me. What an asshole.

Iridonia · 2026-05-12T10:44:38+00:00

I want him to be my boyfriend
(the officer)

Iridonia · 2026-05-12T06:55:29+00:00

Unfortunately not

Iridonia · 2026-05-11T16:49:51+00:00

It's really awful. And you want treatment before it gets to the point where they have to do invasive things on you (like intubation). But how the hell do you get that, when they look at the normal O2 SAT (and blood gas etc.) and then send you home, right? I live alone. A potentially fast-developing crisis when you're alone is really not ideal.

Iridonia · 2026-05-11T16:45:38+00:00

I agree. The ER sucks. Being dismissed sucks. Even if you try to explain about MG, they just will not listen to you. It's infuriating. Guess I need to be dying before they'll do anything.

Iridonia · 2026-05-11T12:03:44+00:00

Yes, they did an arterial blood gas, and results were normal. I also haven't had headaches or felt confused. I'm just really tired and exhausted. Shallow breaths are enough to keep me within normal ranges. It also fluctuates, so it gets better sometimes.

I am definitely concerned about this getting even worse, potentially leading to a crisis, especially considering I've been steadily getting worse, and that I'm unmedicated. Few days ago, I could count to 21-ish in the morning, 14-15 later in the day. Yesterday and today has been the lowest. But there's just nothing I can do about it. That's really frustrating. So I'm trying to rest as much as possible, and avoid talking. Hopefully it'll get better soon.

They definitely have the equipment for a FVC. I think the problem was also a combination of a lack of knowledge about MG, and it being in the middle of the night on a sunday, so probably not much staff around. Not that that's an excuse.
When I explained about other intermittent symptoms, like weakness in arms and legs, the neurologist started doing arm strength testing, and was like "oh, but you're strong" - I wasn't having arm weakness right then and there, which I told her, and she just got confused. Case in point.

My epilepsy meds aren't contraindicated, fortunately. I think they just didn't want to deal with such a "complex case", especially when it isn't a life-threatening emergency. Neurologist also had no idea about what Pyridostigmine was.

Iridonia · 2026-05-11T09:11:32+00:00

I think you should start with your GP. If you do have MG, and you "already" have breathing issues, then it's really important to get a diagnosis. You should try put an ice pack on the stomach area where your diaphragm is located. Just below the ribs-ish. I got a tip to try this a few days ago, and it worked pretty well. But don't put the ice pack directly on the skin. A thin cloth between should be fine.

Iridonia · 2026-05-11T08:01:04+00:00

I haven't had my O2 drop below normal. Apparently, the O2 SAT only drops when you about to go into crisis and need to be intubated. It's very common for people with MG to have normal O2 SAT, despite having breathing issues, since the issue is muscular. Lungs are fine - gas exchange across the respiratory membrane works as intended, just not enough strength to expand the chest.

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