Myasthenia gravis and pregnancy

I’ve been dealing with myasthenia for seven or eight years now—seen just about everything there is to see—but things have been stable lately. With the right medication, I manage to scrape by a somewhat normal life... I got married a year ago, and my husband and I are seriously considering having a baby. I’ve done the reading, talked to my neurologist, and gone through the motions, but I wanted to hear from actual people... if anyone here has firsthand experience or knows someone who has walked this path...

My cousin’s been dealing with myasthenia since she was eleven—it's a pretty heavy case. Honestly, looking at her situation, it feels like she's on a mountain of meds. She's constantly on Mestinon and Prostigmin; without them, she's basically non-functional.
She had her first spontaneous pregnancy, and then when she got pregnant the second time, everything went fine.

I experienced a miscarriage about a year ago—though the doctors and all my test results insist there was absolutely no link to my condition. And honestly? I believe them too... It’s just that I’m stuck on 10 mg of Decortin, one Imuran, and five Mestinon daily; I simply can't function on anything less. I really wish I could taper down those doses before trying to conceive... My neurologist mentioned I should stop the Imuran three months prior to conception, though the rest of the meds can stay...

I've been chatting with her lately, so I'll give you the full scoop on how she was mixing those meds once I know more. How are you even getting your hands on all that? Out of everything you listed, I've only ever heard of Mestinon... honestly, I'm not even sure if they carry any of that stuff here in the States.

Anyway, wishing you nothing but the best with the little one...🙂👍

Thanks—I’m going to need all the luck I can get.
Regarding the medication situation, things are stable for now—they're available in our local pharmacies... back in 2000, when I first fell ill, I had to source everything from overseas and pay full price for $133 a single vial, but now... insurance actually covers it...

I know a woman who, despite having the exact same diagnosis, managed to give birth to two beautiful little girls. I know she had to be under incredibly strict medical supervision throughout the entire pregnancy, but she pulled it off 😍

That’s how my doctors laid it out for me—everything should be perfectly fine as long as it stays under strict supervision...

Not sure if it’s weird to have two similar threads going... maybe they should just be merged?

It’s tough trying to speak for someone else, especially covering all the stages of this illness... it started when she was 11, five years ago, and it hasn't stopped since.

Regarding pregnancy—she definitely didn't touch Imuran; she actually avoided it until after she gave birth. She was on Mestinon 5-6 times a day (sometimes more, even though it isn't ideal) and used 1 Decortin.

She knows Prostigmin and Mestinon are similar, but the difference is that Mestinon kicks in slower but lasts longer, whereas Prostigmin hits faster and harder—so she relies on that when she's heading out into the city and stuff.

Alright, let's get this thread started. 😍

Hmm, where to begin? To start with, I am officially 7 weeks and 3 days pregnant, according to my doctors. Of course, everyone knows they calculate from the first day of your last period, so in reality, I’m actually 5 weeks and 3 days along (I know this precisely because I’ve been tracking my cycles and ovulation since we decided to start trying for a baby 🙂). I’m not entirely sure if conception success rates have any correlation with my myasthenia, but here is the scoop—it took three tries. For those first two cycles, we were really aiming for 😉, basically "covering" every possible window, both fertile and less so. I was even using those famous LH ovulation strips; we were certainly putting in the effort, yet nothing stuck. Having spent so much time deep-diving into everything online regarding conception, I can say now that we actually did quite well; succeeding on the third attempt is excellent when you consider the statistics for healthy women 👍
. Now, as for how I’m feeling. Regarding my myasthenia symptoms, I’d say there has been a slight worsening overall. My symptoms feel more pronounced than they were before pregnancy. It isn't necessarily every single day, but there are more days when I feel unwell compared to how things were before. I should mention that during those three months of trying, I gained about 7 or 8 pounds (I lost my job, so I was home all the time eating, and since it was winter, I wasn't getting out much). I mention this because it feels to me like the flare-up in my symptoms is a combination of that extra weight, the pregnancy hormones, and my mental state (for instance, my husband and I both lost our jobs in December and have been living on unemployment benefits—you can imagine how that feels).
Regarding medication—I was previously on 3 Mestinon daily, and I’m still managing that, though it doesn't feel as easy as it used to. For example, I sometimes feel incredibly exhausted in the evening, making it difficult to move around. This usually hits me around 8 or 9 PM, and since I’m heading to bed shortly after, I don't want to take an additional pill just for that. My myasthenia has always primarily affected my arms, legs, and eyes, and that remains the case; the symptoms are more intense, though I haven't noticed them spreading to other muscles yet. I must mention the HORRIBLE double vision I've had for months leading up to the pregnancy. Back when I was working, it was present, but mostly in the afternoons and evenings, so it didn't interfere with my job. It would usually hit for two weeks before my period, then I'd have two good weeks, and so on. But ever since I became pregnant, I have it every single day. Every day. It still tends to show up in the afternoon, and occasionally even before noon, but it is a daily occurrence now. It’s frustrating, but I suppose if this is the worst of it, I’ll take it 🙂. My neurologist previously mentioned that Mestinon doesn't typically work well for those ocular muscles and suggested corticosteroids for the double vision, but I didn't want to take them just for that, since it didn't disrupt my daily life as long as it only appeared in the late hours 😉
. Since this post is already getting quite long, I’ll write about the situation with my OBGYNs and my prenatal checkups in the next one. For now, I’ll just say that I had an ultrasound three days ago, and I heard and saw the baby's little heart beating and the circulation—and it's a whopping 9 mm! Such a little sunshine.
Anyway, I won't overwhelm you with too much information at once, and I want to make sure I have enough material left for a follow-up, so I'll stop here. Talk to you all again soon!!
Kisses to everyone!

bluehound33 said:so, I'm bumping this thread 😍
...

BIG CONGRATS, bluehound33, to you and your husband!!! 😍 🙏 👍
Finally, an American woman sharing her pregnancy story here. Thanks for that.

You are so welcome, dear. I truly hope that someone might find even a little bit of value in this, if it helps at all 🙂

bluehound33 said:thanks dear, you're very welcome. hopefully this helps someone out even just a little bit 🙂

Yeah, well, I'm gonna drop that one single article about myasthenia and pregnancy here again too -

People will use it, trust me. No one else has bothered to write about it, so maybe they finally will. Especially those with myasthenia who are trying to get pregnant 😉.

More info on myasthenia and pregnancy. Might be worth a look if you want some facts...

Kate Ward16 said:Here’s some more reading on myasthenia gravis and pregnancy—it’s actually quite informative if you have a moment to look through it:

You know, looking at this, what really caught my eye was that the woman in the thread is in remission and isn't taking any medication at all... truly the dream scenario for anyone dealing with MG, isn't it? 🙏I honestly wasn't aware that was even an option. Though, now that I think about it, I recall my neurologist telling me right after my diagnosis that MG is incredibly unpredictable; it can just vanish as suddenly as it arrived. If only it were that simple for the rest of us, wouldn't that be something? 🙂🙂🙂🙂🙂

I decided to check back in with you all. I've noticed that for the last few days, I’ve actually been feeling quite good—almost like how I felt before becoming pregnant. At least, when it comes to my myasthenia symptoms. I suppose things are finally starting to stabilize, and perhaps my body is just getting used to this massive influx of hormones. I have a follow-up appointment with my neurologist tomorrow, so I'll let you know what she has to say.
As for the pregnancy itself, I’ve been dealing with constant nausea for three weeks straight. It’s happening every single day, all day long (I really don't know who came up with the term morning sickness). I have no idea what to eat; almost everything looks unappealing, and even the smell of food is unbearable. My sense of smell has become so incredibly sharp that I feel like I could go out and hunt for truffles 😁. Even perfumes are far too strong, and any minor scent feels like the most revolting thing imaginable. But I suppose this too shall pass; there isn't much else to be done.
I am forcing myself to eat because I know it's necessary (otherwise, the baby would be trying to pull nutrition out of nothing but pure fat 😁), but the nausea makes it maddening. This is supposed to taper off by the end of the first trimester, which for me would be at the start of my fifth month. Just one more month to go. 😲
On top of that, I am constantly running to the restroom; I even have to get up during the night. They tell me it's all due to the hormones, and later on, it'll be because the baby is pressing against the bladder. Honestly, though, I'd much rather deal with that than this nausea. 😉
Anyway, that is enough from me for now; I don't want to bore you all too much. 🙂 Talk soon.

Well, here I am again. 😉 I suppose this is starting to look a bit like my own private pregnancy journal, considering I’m the only one posting here lately, but I suppose there's no harm in that, is there? 🙂
I wanted to share that I had my follow-up appointment with my neurologist yesterday. I walked away with some information, though truthfully, there isn't much to report since everything is so incredibly individual. She shared what she has gathered from her own clinical practice and experience—for instance, she noted that for most pregnant women, myasthenic symptoms tend to be more pronounced during the first trimester and then again in those final few weeks before delivery. She also mentioned that a sudden flare-up often occurs immediately postpartum because the body is essentially in shock; the baby is delivered, you lose several pounds almost instantly, hormones shift violently, and all of that combined naturally impacts the myasthenia. For some, it’s intense; for others, it’s mild. She even remarked that some women experience no symptoms at all during pregnancy and don't need any medication—if that were the case for me, I’d probably have a whole house full of kids, wouldn't I? 😍 Ultimately, every woman's journey is different. She advised me not to dwell too much on the myasthenia itself, and specifically, not to obsess over the statistical data found online (I did mention that one specific article to her). Statistics are generalities; numbers tell a story, certainly, but they don't necessarily reflect my specific reality. And, of course, she urged me to stay positive, as our mental state plays such a significant role in managing myasthenia. We all know this, of course, but if only we had a reliable recipe for "positive thinking," wouldn't life be much simpler? 🙄
Regarding medication, she said that taking three Mestinon doses a day during pregnancy is perfectly fine, and that I could even take five if necessary, as it won't cause any issues for the baby.
One very specific detail is that I will have to give birth exclusively at Petrov Hospital. It will likely be a planned C-section performed under spinal anesthesia. That’s the method where you remain awake but don't feel anything from the waist down, allowing for the procedure to happen while you're conscious. Apparently, this is much better for myasthenic patients than general anesthesia, and it allows you to hold and see the baby immediately to start breastfeeding. Those are definitely advantages over being knocked out. I have to go to Petrov because they have a highly specialized team experienced in delivering mothers with myasthenia. They monitor the baby immediately after birth to check for neonatal myasthenia, since my antibodies can cross the placenta through the umbilical cord. She told me not to worry about that; even if it does occur, it lasts only about two or three days, manifesting perhaps as the baby feeling a bit "floppy" rather than having firm muscle tone. Furthermore, there shouldn't be any issues with the baby's sucking or swallowing, as that is exceptionally rare with neonatal cases. That is precisely why Petrov is the best place—they know exactly how to recognize it and how to handle it. I asked about the doctors' experience, and she mentioned they have handled about 60 deliveries for mothers with myasthenia. To me, that seems like a significant number, which leads me to wonder: where are all those mothers now? How is it that not a single one of them has shared their experience on the internet or on a forum? 😕 😕
Anyway, I've gone on quite a tangent again, so I'll leave it there for now. Talk to you all soon. 👋

Dear Eleanor, I am sending you my most heartfelt congratulations, and I truly hope everything goes perfectly smoothly!! I honestly believe it will. Your posts are absolutely fantastic—they’re incredibly detailed, which is exactly how they need to be when you're sharing such precious, vital information. Ever since I was diagnosed, I've found myself constantly spiraling into thoughts about pregnancy—wondering if it's even possible, what might happen if things get complicated, or even just the terrifying thought of what I'll do if I'm physically unable to pick up my own child... I'm still a long way off from that stage, obviously, but there is something so incredibly comforting about being able to get firsthand information directly from someone else. So, thank you, and please, keep these posts coming!

Grace Johnson78 , thank you so much for the well wishes and for that motivating post. It truly warms my heart to know that sharing my experience might help others, even though we all navigate our journeys with myasthenia in such uniquely different ways.
In this particular post, I think I’ll vent a little about the sheer dysfunction of our healthcare system. It isn't exactly breaking news, is it? And yet, every single time, it leaves me feeling just as exasperated as the last.
When I first confirmed my pregnancy with a home test, I immediately called my primary OB/GYN—the one I see through my insurance. Instead of a doctor, I was greeted by her sister, who informed me that the doctor was out on extended medical leave with no return date in sight. Her suggestion? Since I felt fine, perhaps that crucial first prenatal visit could just wait a bit. 😠??!?! Well, given how early it was—I was only about two or three weeks along—I thought, *fine, I'll wait for her to return.* Fast forward to my sixth week, and I call again only to find she is still out, there is still no word on her return, and there is absolutely no coverage provided. ?!?!?!?!?😲😠 Now, from day one, I have been classified as a high-risk pregnancy. Both my previous doctor and my neurologist emphasized that the moment I confirm a pregnancy, I must seek immediate specialist oversight because my myasthenia requires strict monitoring. Feeling utterly frazzled, frightened, and overwhelmed by the sudden helplessness of the situation, I decided to call a colleague—a nurse working at the county hospital—to see if she could help me coordinate an appointment there. Fortunately, she managed to pull some strings, and I was able to see a doctor who performed an ultrasound during my seventh week. It was a small mercy; we could see the baby was developing well and hear the heartbeat, but he didn't go much further than that. He didn't perform a pelvic exam or check my cervix, for instance. He simply wrote his report, recommended the standard prenatal blood work, and that was it. I am genuinely grateful to him; he was wonderful and actually possessed a working knowledge of myasthenia. He knew that these types of pregnancies must be managed exclusively at Petrov Hospital, and he even mentioned he sees patients privately if I ever needed more specialized care. But honestly, who can afford to manage an entire pregnancy privately? Where would that kind of money come from? After that, I felt a bit more settled, but I still needed someone to issue the lab orders. I called my regular clinic again. The doctor is still on leave, but they finally have a replacement—only she works on Friday afternoons in a city located 31 miles away from mine. So, yesterday, at eight weeks and two days, I finally had that "famous" first prenatal exam. And that replacement doctor? Good heavens, save us. First of all, she was about as gentle as a bulldozer (I suspect every male gynecologist would be more tender than her). Second, the exam lasted ten seconds; she just poked and prodded me with these heavy, clumsy hands. I half-expected my poor baby to go into shock from the ordeal 😲 and nothing else. She seemed mostly interested in washing her hands of me so she wouldn't be held liable for anything. She repeated a million times that I’d need to head straight to Petrov Hospital in a month, that they would take over my care because I'm so high-risk, blah, blah, blah... I told her, "That's fine," but I haven't even had a proper exam, I don't have a prenatal file, I haven't even had blood work done! Someone has to write the referral for Petrov! The way she rattled me... it was exhausting. In the end, she gave me the lab orders and told me to come back for another exam in three or four weeks once the results are in. ABSOLUTELY TERRIBLE.
Now I am considering switching from my "socialized" insurance doctor entirely, since she is on such a long-term leave that who knows when she'll be back. I certainly won't be going back to that butcher who is covering for her; I was in pain for half an hour after she finished. She didn't ask how I was feeling, nor did she offer any useful insight—she just mumbled toward the end that everything was fine because my cervix was closed (I looked it up online and apparently that's good because it lowers the risk of miscarriage). What a lunatic...
The trouble is, I'm not sure who to switch to. In my town, there are only two gynecologists. One is just mediocre—neither good nor bad. And the other? Brace yourselves: he was previously suspended for inappropriate touching of patients, but they brought him back and now he's supposedly attending psychotherapy?!?!?!?!?!!?!?!?!?!?! I know this for a fact because a cousin of mine is his patient. UTTERLY REVOLTING.
So, how am I supposed to be the rational one here? How does one even begin to navigate a situation like this within the healthcare system?! A coma. It’s just... heavy.
But, well. Life goes on, and it's still beautiful in its own way. 👍