It has been nearly three months since my last update. While I haven't quite returned to my pre-pregnancy baseline yet, I feel like I am getting very close. 🙂🙂🙂🙂🙂🙂 Currently, my regimen consists of four Mestinon and 10 mg of Decortin, though the hope is to taper off the Decortin entirely very soon. For the most part, I am feeling quite well. The only real struggle is a lingering weakness in my hands—though perhaps that’s just a result of constant baby duty and keeping up with everything around the house? It isn't a constant issue, either; the weakness tends to flare up most noticeably for about three or four days leading up to my period. Still, I remain optimistic that things will stabilize soon. Since it seems a bit quiet in here lately, and having already shared my journey through pregnancy, I think I will wrap things up with this post. If anyone ever needs to reach out or has a question, please feel free to send me a private message. Best regards!
Even with the 40 mg dose of Decortin, things weren't exactly going smoothly. I actually had a bit of a stumble on the stairs at the grocery store 😢—which, honestly, hasn't happened since I started this whole medication regimen. We eventually decided to scale back to 30 mg, and after making sure to get plenty of rest, I felt a bit more stable. But then, of course, we had that sudden snowstorm and that unpredictable, slippery weather, which seemed to set me back again. Right now, I’m taking about 5 or 6 Mestinon and 30 mg of Decortin. After a week of this, we’re planning to drop down to 20 mg, because, frankly, I'm not seeing much benefit from them at this stage. My doctor’s advice? Just keep resting, try not to stress too much, and let things settle naturally. It's all about patience, I suppose... To wrap things up: it's been two and a half months postpartum. After a significant setback, things are finally starting to stabilize a bit, provided I take more Mestinon and keep my physical activity to a minimum. I'll check back in once I feel like I've returned to my pre-pregnancy self—fingers crossed that happens soon. 😉 Best,
Well, after a week, I’m finally starting to feel some improvement 🙂. It isn't a miracle cure, obviously—it would be foolish to expect one—but things are moving in the right direction. Starting today, I am tapering down my Decortin to 40mg for the next week. At least there's progress, and I'm genuinely happy about that. I should point out that staying on top of my Mestinon schedule and drastically cutting back on physical activity have played huge roles here. Looking back, I think I overdid it at the very beginning; we were constantly on the move, and I just pushed through the exhaustion by relying on my Mestinon every four hours. In hindsight, it feels like that might have actually been counterproductive. For this past week, however, I've stuck to 3-4 doses of Mestinon and focused heavily on resting (my husband and mother have stepped up to handle all the chores and childcare), and well, the results are showing. Plus, it seems my hormone levels might be stabilizing as well. Now, I don't want to sound like I'm pitching a supplement, but I have been taking bovine colostrum in capsule form. I know many people are skeptical about its effectiveness, but I’ve used it before and found it helpful, and my doctor even suggested it might assist my recovery. So, perhaps that has contributed to the shift as well. Ultimately, after trying various combinations, I believe I've found the formula that works for me. 😉 Now, it's just a matter of proceeding slowly and patiently, hoping I eventually return to how I felt before the pregnancy. I am truly counting down the days until spring, when we can finally start going for walks with the baby. No one could be happier than me...
Here I am with an update 😉 after spending a week on 50 mg of Decortin. There’s been very little improvement, if any. To put it in perspective, instead of feeling terrible all day long, I now get a few hours here and there where things feel slightly more manageable. However, climbing stairs remains an ordeal, as does simply lifting my arms—you know, the usual struggles like blow-drying my hair or getting dressed. My hands and fingers are still a nightmare, though occasionally I can actually manage to pluck two or three hairs with tweezers 😛 My doctor suggested staying on the 50 mg dose for another week before tapering down to 40 mg. The idea is to let the body "absorb" the benefit a bit more, though things really ought to be trending upward by now. A new development, however, is that I finally had my first period since giving birth. According to the doctor, this plays a significant role in how everything feels right now. Apparently, once everything stabilizes hormonally, I should hopefully return to how I was before the pregnancy. I’m trying to remain patient and hold onto that hope; frankly, it’s all I can really do 🙄
I also wanted to add a quick note regarding neonatal myasthenia in infants. In some of my earlier posts, I inadvertently shared some incorrect information—mostly because that was my own understanding at the time. It turns out that neonatal myasthenia typically manifests in babies within 3 to 5 days. During those initial days, the infants are kept under close observation in a specialized unit. While symptoms often show up within 48 hours, in my son's case, they didn't appear until the fifth day. The primary signs are muscle weakness, or hypotonia (though that can stem from many different causes), followed by swallowing difficulties—which is what my little one experienced, choking slightly while feeding from the bottle. In more severe cases, respiratory issues can occur, though I'm told that is exceedingly rare. Essentially, the infant carries the mother's myasthenic antibodies, which cross through the placenta. It takes about 3 to 4 weeks for those antibodies to clear out of the baby's system. (That was a bit of a shock to me; I had mistakenly thought it only took a few days rather than several weeks). Furthermore, the mother's condition isn't necessarily tied to the child's symptoms. It is entirely possible for a mother to have a severe case while the child shows no symptoms at all, or vice versa. Even subsequent pregnancies don't follow a pattern. For instance, if my first child had myasthenia, it’s entirely possible the second won't, or perhaps the first didn't and the second does. There are no rules Our dear MG is completely unpredictable and follows no set logic... it's quite daunting. It always manages to catch us off guard, and we never truly know what to expect. But then again, I suppose it's better that the surprises aren't worse than they already are 😁
I haven't seen any real improvement from the 20 mg dose yet. In fact, things have actually taken a bit of a turn for the worse over the last few days, even with the heatwave we've been having here in the States. So, I reached out to my neurologist again, and she decided to bump my Decortin up to 50 mg. She mentioned that it should take about a week before we can touch base again to see how I'm holding up. The plan is to let the dosage "stabilize" first, and then we’ll start tapering down slowly. It’s been quite difficult lately—not just the physical toll, but the emotional weight of it all is heavy... 😢 I'm really hoping for some relief soon. 🙂
I gave my doctor a call earlier today to discuss adjusting my treatment plan, mainly because my myasthenia has taken a bit of a turn for the worse over the last few days. There’s this heightened weakness in my hands—specifically in my palms and fingers—to the point where I’m dropping things constantly. Honestly, it makes me a little hesitant to even hold a child. The doctor assured me that this is entirely expected and quite normal; apparently, my hormones are all over the place right now, reacting to everything that's been thrown at me this past month (between the delivery, the stress, and those inevitable postpartum tears). 😁She suggested increasing my Decortin dosage from 10 mg to 20 mg daily, and we'll stick with that until I feel more stable, at which point we can start tapering off gradually. What really mattered to me, though, was hearing that this is just a temporary phase—that eventually, things will settle back down to how they were before the pregnancy. I'm truly hoping that happens sooner rather than later.
So, I am finally back home with the baby at last. My experience at Petrov Hospital wasn't exactly pleasant, to say the least. I suppose I should start somewhere... When I was exactly 39 weeks pregnant, I went to Petrov Hospital for a non-stress test (NST), and they decided to admit me that very same day because the results were non-reactive—which meant induction might be necessary if things didn't improve during the day. Since there wasn't any room available in the high-risk maternity unit, I spent two days in pre-labor, then moved to the general maternity ward for about five or six days. It was only after that that I was transferred to PT1, which is where I actually should have been all along. The strange thing is, during that entire period, nobody actually examined me; they just ran the NST three or four times a day. That test is supposed to indicate how the baby is doing and whether we need to move toward induction. However, it seems most of the doctors take those findings quite casually—they glance at them and that’s about it. Then, the day before my due date, the doctors from the general ward concluded that my NST wasn't looking great and told me I’d need a C-section the following day. I spoke with the anesthesiologist that same day, signed the consent forms, and was taken by a nurse to see the doctor from my specific unit just to confirm the scheduled surgery. That is when the nonsense began. This particular doctor (I won't name names) saw me for the exam and flatly stated that a C-section was out of the question. He insisted we wait for natural labor and actually questioned why the doctors from the other ward were "interfering" in his business! How can two highly trained obstetricians have such wildly different opinions? He also claimed he would find me a bed on his unit tomorrow so I could be under his "supervision." (In hindsight, it turns out it would have been much better if I hadn't been under their supervision; they weren't exactly experts in patient care.) So, I sat there for a few more days. I was seen by five different doctors from that department, and not one of them mentioned a C-section; they were all strictly focused on natural delivery. Not once did anyone ask how I was managing with the Mestinon, or if I felt I would have enough strength left for the pushing stage. Then the weekend arrived, leaving me with only the on-call doctor, who didn't even bother to examine me. On Monday morning, I had an exam only for the doctor to conclude that over the weekend, my amniotic fluid had become extremely low (it hadn't leaked out, it had just thickened). He decided I would undergo induction the next day. By then, I was already six days past my due date. I hadn't even begun having contractions, yet I had spent days walking around the hospital with my cervix already two fingers dilated. Yet, no one seemed to think that perhaps it was finally time for me to give birth... Anyway, on Tuesday night, the contractions finally hit. Regardless, at 6:00 AM, they put me on a drip as planned, ostensibly to "augment" my natural labor. They promised an epidural, and I did eventually get one, but only around 10:30 AM once the anesthesiologist finally deigned to show up. To make matters worse, he let a junior resident practice the epidural on me. She struggled with me for about twenty minutes before he stepped in arrogantly, saying, "Move aside, I'll do it; we can't afford to mess this up given the Mestinon situation." (Seriously? Must I even comment on that?) By the time I got the epidural, I had already been through hell, because those induced contractions are absolutely brutal. I tried to breathe through them, but I kept tensing up. During those five hours without anesthesia, every muscle in my body—except the ones needed for pushing—was cramping with every contraction. By the time it was time to push, I was utterly exhausted and running on empty. We tried for a long time—push, pause, repeat—but nothing was happening. Finally, at 2:30 PM, the baby was delivered via vacuum assistance, with a doctor applying heavy pressure to my abdomen. Everyone kept saying, "It's coming, the pelvis is wide enough," but the baby simply couldn't emerge because I lacked the strength for that final surge. By then, it was too late for a C-section because the baby's head had descended into the birth canal, and there was no going back. When it was finally over, the baby didn't cry immediately; he had an Apgar score of 7/8 and was rushed straight to the NICU for an IV to recover from the traumatic birth. As for me, I was given two bags of fluids to help me recover, as I had nearly fainted while lying on the table. And then the struggle with the pediatricians begins. Honestly, it’s a total madhouse. There are so many of them, yet everyone seems to have a different opinion, and nobody will give you a straight answer—it's all very "circle the wagons" and protect one another. My little one spent his first day in an incubator and then moved to the post-ICU unit. He had to stay there to recover and, more importantly, so they could monitor him for any signs of myasthenia. While he was recovering, around the fifth day after birth, they noticed what they claimed were symptoms of myasthenia—specifically difficulty swallowing and choking. So, for one day, they fed him via a tube and started him on 5 mg of Mestinon. He actually responded quite well to it and went back to bottle feeding. They kept him on Mestinon for about 10 to 14 days, I can't recall the exact duration. Eventually, the pediatrician told me they were giving him the medication preventatively; she suggested the choking might not even have been myasthenia, but perhaps just a lingering effect from birth asphyxia. There is some sort of antibody blood test, but since results take two or three months to come back, they didn't bother running it because neonatal myasthenia symptoms typically resolve spontaneously within three to four weeks. Consequently, even now, I still don't know for certain whether my child actually had myasthenia or not. I asked the pediatrician at discharge, and she admitted she wasn't even sure herself—she said they treated him as if he had it because they administered the medication, but it might not have been myasthenia at all. So, there you have it. Isn't that just wonderful? It may not sound overwhelmingly negative when laid out like this, but for me, it was absolutely harrowing. You place your trust in the doctors, only to endure such exhaustion—both for myself and the baby—all while facing consequences that might have been avoided if they hadn't been busy shifting blame among themselves. Well, it is all behind us now, but I certainly learned my lesson: next time, I will think much more carefully and ensure I am thoroughly informed beforehand. If anyone else has questions, please feel free to ask; I am happy to help. And please forgive the long post, but I simply felt the need to get all of this off my chest.
Hello everyone! I just finished my second check-up at Petrov Hospital, so here is the report 🙂 though there aren't many groundbreaking updates to share. As for the pregnancy itself, everything is going perfectly—thank goodness. I saw Dr. Blajić, who is quite lovely; he’s a very grounded person and seems to truly know his stuff 🙂. He assured me that everything looks good and that my body is gradually preparing for delivery. I'm heading back in a week for a CTG scan (which will mark exactly 39 weeks), and then at 39 weeks and two days, they’ll admit me to the PT1 unit. I haven't quite grasped whether they intend to induce labor that day or if they'll just have me staying under observation while waiting for natural contractions to kick in. Honestly, I don't mind either way; my only hesitation is the thought of lying around in a hospital bed for days just 😉. They also wouldn't commit to predicting whether it will be a vaginal birth or a C-section this time around. If I continue feeling as well as I have been, I'm hoping we can at least attempt a natural birth, especially since the baby is doing great and is positioned perfectly. But we shall see. I trust the doctors; they certainly have plenty of experience dealing with us Myasthenia patients. So, exactly one week from today, I'll be at Petrov Hospital, and who knows, I might even be delivering! I can hardly wait!! Regarding the Myasthenia, I’m still feeling quite well, aside from the occasional day where symptoms feel a bit more intense. Even then, it doesn't last all day—it’s usually just something like a rough morning before the Mestinon kicks in, or perhaps an evening when I've overexerted myself. I am incredibly relieved; my neurologist had warned me that things would likely take a turn for the worse four weeks before delivery. Yet, here I am, a week and a half away from my due date, and I'm still zipping all over town, running errands and hitting the shops... 😍 Following medical advice, I've started taking 10 mg of Decortin daily. I don't notice a massive difference, but perhaps it's keeping things steady behind the scenes... I am hopeful that I can stay on this low dose after the birth so that breastfeeding remains an option. Anyway, I'll talk to you all soon.
Just wanted to drop in and give you all a quick update 😉 I had my first appointment at Petrov Hospital yesterday, and to be brief, I’m feeling quite positive about it. I know there have been various complaints floating around regarding the staff and doctors at Petrov, but I want to say right off the bat that my experience was actually very good. I was in the maternity clinic—where they see everyone from high-risk cases to "routine" pregnancies—and while the crowd was absolutely massive, the nurses and doctors seem incredibly well-coordinated, so everything moves along relatively efficiently. Dr. Blajić was the one who examined me, and honestly, I can’t say enough good things about him. He was exceptionally approachable, kind, gentle, and truly empathetic. Even though our session was fairly brief, he asked every necessary question and made sure I understood everything I needed to know. After all, how could he possibly spend half an hour with every single patient when the waiting room is that full? So, the short version: he wants me back in two weeks for a follow-up and a CTG, which will put me at 38 weeks. Also, because of my myasthenia and the fact that I don't live here in Washington, D.C., he suggested that I be admitted to the ward a few days before my due date to stay put and wait for labor. That actually works perfectly for me; I think I would have panicked if labor started while I was at home, given that it’s about a ninety-minute drive to Washington, D.C. When I return for the next visit, we’ll finalize the admission details. For now, he told me not to jump to any conclusions; we’ll assess everything once the delivery gets closer and see how I’m managing with the myasthenia. As for symptoms, I feel like things have worsened just a little bit. I've had to slow my pace down slightly, though I'm still functioning normally on a daily basis—getting around, keeping up with housework, and so on. I'm relieved about that; I really hope it stays this way so I can have a natural birth rather than a C-section. But, of course, we shall see. I'll check back in if anything changes or after my next appointment.
Carol Thomas15 said:My sister lives with myasthenia gravis and has three children. She was actually diagnosed right after her second daughter was born. She had to stop breastfeeding at that time. She eventually went to a hospital in Washington, D.C. for surgery on her thymus gland. Her son was born about twelve years ago at Petrov Hospital in Washington, D.C. Everything turned out quite well for her; she managed to breastfeed her little boy until he was a year old. Since the surgery, she hasn't needed any medication at all. She leads a perfectly normal life as a homemaker. And her daughters? They're currently attending nursing school.
I really appreciate you sharing your sister's experience regarding myasthenia and pregnancy. Every bit of information is incredibly helpful to me, and I suspect it will be just as useful to other pregnant women navigating this diagnosis. It is truly wonderful news that she no longer requires therapy; occasionally, myasthenia can offer a pleasant surprise by receding entirely. While the condition remains unpredictable, wouldn't I choose this diagnosis over many other chronic illnesses? At least with this, one can hold onto hope for a better outcome. 😉
Well, here I am again with a few updates. I had my follow-up appointment with my neurologist yesterday, and she shared some information that I hadn't quite considered before. First off, let me say that things with my myasthenia are holding steady; I’m still taking 3 to 4 Mestinon daily and feeling generally good. My only real complaints are some lower back pain and a bit of swelling in my legs, though that’s just the pregnancy talking rather than the myasthenia itself. I’m currently a little over 32 weeks along. Regarding the delivery, my doctor strongly advised that I plan to give birth at Petrov Hospital. They have specialists there who are already experienced with patients managing myasthenia, plus they have a dedicated neonatal unit for the babies. I’ll need to go in for an initial consultation about a month before the due date, which should be sometime in mid-October. She also mentioned that the staff there is incredibly approachable; I feel quite confident in them because they are highly skilled and very willing to coordinate on a personalized plan. She recommended that I start taking Decortin 10 mg about two weeks before delivery—possibly increasing to 20 mg if needed—because symptoms can flare up during those final three or four weeks of pregnancy. Taking the Decortin helps prevent a significant worsening of my condition and makes the labor process much more manageable. I’ll also need to continue taking it for a while after the birth until everything stabilizes again. I did ask if this was strictly necessary, given that Decortin hasn't seemed to make a massive difference for me in the past, but her response was firm: it is essential, not just for my sake, but for the baby's too. At this stage of development, it isn't nearly as harmful as one might fear. The exact dosage will be decided in consultation with her and the doctors at Petrov Hospital, who will assess my status in person. As for the delivery itself, she noted that a C-section isn't always a requirement. Some women with myasthenia are able to deliver vaginally, which is often preferable for a quicker recovery, but if a C-section becomes necessary, it isn't something to dread. They typically use spinal anesthesia, which is actually better for myasthenic patients than general anesthesia—not to mention it carries fewer risks and side effects in general. Whether I'll have a vaginal birth or a C-section will be determined by the medical team at Petrov Hospital based on how I'm doing leading up to the big day. I asked her what I should realistically expect—essentially, what is the worst-case scenario? I wanted to know just so I could prepare myself mentally and avoid any unnecessary shock if things take a turn. Regarding my own health, she said it’s likely that my myasthenia symptoms will flare up both before and after the birth, though it's impossible to predict the severity or duration since everything is so uniquely individual with this condition. As for the baby, there is a possibility of neonatal myasthenia. This isn't a permanent condition for the infant; rather, my antibodies cross the placenta into the baby's bloodstream, but they don't stay there. In those cases, the baby might seem a bit floppy, but it usually only lasts about three or four days, and the infant is treated with Mestinon as well. It’s nothing to be truly frightened of; the baby will have normal bodily functions and can feed normally—via bottle, or even breastfeeding, provided I don't exceed 20 mg of Decortin. So, that’s the long and short of it. There will be more vital details to discuss during my appointment at Petrov Hospital. I’m starting to get a bit restless, honestly; I can't wait for all of this to be over and for our little nugget to finally arrive. It’s strange, but I don't feel particularly afraid. I trust the doctors, but more importantly, I trust myself and the baby. We’ll navigate this together.
quietcyclist said:Dear Eleanor, and all my fellow expectant mothers out there.
I’m checking in here for the very first time, currently sitting at 37 weeks pregnant. I have to say, I am genuinely relieved that someone has finally started providing some actual substance and detail on this topic. At the beginning of my pregnancy, I spent countless hours scouring every corner of the internet and scanning through endless forums, desperately hoping to find some useful advice or shared experiences, but I came up empty-handed. It was quite frustrating, really. But I won't ramble on too long... I’ve been navigating life with myasthenia for about six years now—I’m 29 at the moment. Three years back, I underwent a thymectomy, which was followed by a regimen involving Mestinon, Decortin, and Imuran. About a year ago, we decided to phase out the Imuran, and once I started my pregnancy journey back in November 2010, we discontinued the Decortin as well. Early on in my pregnancy, I experienced a bit of a flare-up with my myasthenia, though thankfully it stabilized right around the start of my fourth month—coincidentally, that was exactly when the morning sickness finally let up. But, as luck would have it, that brief window of relief was short-lived. By the second week after that, things started sliding downhill again. It reached a point where I couldn't even walk; my husband ended up having to help me shower and get dressed. My doctor decided to introduce Decortin 20 mg over the course of a month. Following that, I went through several weeks of absolute instability—it was like a pendulum swinging back and forth, two good days followed by five terrible ones. I actually hesitated to restart the Decortin because, of course, you can't help but worry about how it might affect the baby. However, about two weeks ago, as this unbearable heatwave hit, my symptoms became just as unbearable. We had no choice but to reintroduce the Decortin 20 mg. This past Monday, I was admitted to the pathology ward at Petrov Hospital. They released me yesterday, but the reprieve won't last long; I’m heading back in a week and will be staying there until I go into labor. My pregnancy hasn't exactly unfolded according to the script, if I'm being honest. You read all these medical texts, and they almost universally claim that myasthenia tends to improve during pregnancy—at least, that’s what my doctor assured me would happen. Apparently, I fall into that rare, frustrating category where things actually took a turn for the worse. I don't want to spend too much time dwelling on the negatives or playing the victim, though. At the end of the day, the only thing that truly matters is that my little one is healthy and doing well.🙂
Dear quietcyclist, I must say, I was pleasantly surprised to stumble upon your post here. It’s been quite some time since I’ve checked in on this particular subforum, so please forgive my delayed reaction. Looking at the date, I assume you’ve already gone through with the delivery—if you don't mind me asking, how did everything go? Every little detail of your experience would be so incredibly precious to me right now. If you aren't comfortable sharing publicly, please feel free to send me a private message instead. I truly hope you and your little one are both doing well. Sending you nothing but the very best! I’m currently in my 30th week, and everything is progressing smoothly—both the pregnancy and my myasthenia status. I’ve moved up to four doses of Mestinon daily, which seems to be doing the trick for me. It’s interesting you mention your experience, because I had a similar trajectory. Early on in the pregnancy, my symptoms flared up quite a bit, but once the initial morning sickness subsided, that specific myasthenic nausea eased off too—though not entirely. I didn't experience the same level of decline that you did; for the most part, things have stayed pretty much the same as they were before I became pregnant. If anything, there's a negligible difference since I bumped my dosage from three to four pills, but honestly, it feels like a wash. I’ve certainly heard those stories about people seeing a significant improvement in their myasthenia during pregnancy, but it feels like those cases are rare exceptions. It seems like those lucky individuals are few and far between, doesn't it? That’s all for now. I really hope you reach out soon with some good news!
Angela Jackson28 said:Hey ladies! I just stumbled upon this sub-thread. Since there doesn't seem to be much experience shared here yet regarding this particular topic, I thought I'd reach out. What do you all think? I find myself wondering how things are currently at Petrov Hospital. My mother actually gave birth there, and if I recall correctly, her experience was absolutely dreadful—and she isn't exactly the type of person who complains easily. The nurses were incredibly rude. Since it was her first child, they basically told her she had all day to wait, yet she nearly went into labor right there in the waiting room because I was in such a rush to get out—it had only been two hours since we arrived. They only allowed her to see me once a week; one time they even practically chased her away because she showed up a second time during a non-working day. For nearly a month, they almost transferred me to Petrov Hospital, where they would have seen me every single day. Not to mention, after 28 years, she still hasn't received a discharge summary from Petrov. It makes me wonder, have they actually improved when it comes to basic humanity? Anyway, good luck with your pregnancy during these times. It’s a few degrees colder today, so I truly hope you're feeling alright!
Dear Angela Jackson28, a lot has changed at Petrov Hospital—everything from the renovated building to the staff. Here is a link that has plenty of details and fresh information, including official updates and firsthand accounts from other women. If you have more questions, feel free to send me a private message; I know a few ladies who gave birth there recently, so I can get some direct info for you. For now, just start by reading this link: http://www.trudnoca.net/forum/viewto...11079&start=60
So, here is a little update 🙂 I had my OB-GYN appointment yesterday, and honestly, everything looks fantastic—I’m absolutely thrilled! We’ve officially crossed the halfway mark of this pregnancy, and so far, it hasn't been nearly as rough as I anticipated. My myasthenia has completely settled down; in fact, I’ve been feeling wonderful for about two months now, perhaps even better than I did before I even got pregnant. I realized recently that the double vision has vanished entirely! Not a single instance! It’s such a relief, and I find myself hoping every day that things stay this stable even after the baby arrives 🙂 As for those other symptoms—that nagging weakness in my arms and legs—they’ve almost disappeared, even though I am still taking 3 Mestinon daily 🙏 It’s funny how things work out. After that initial hormonal rollercoaster and the period where my myasthenia actually seemed to worsen, everything just suddenly stabilized into this calm, steady state. Of course, we’ll see how the final month goes and how things settle post-delivery. But truly, no matter what happens, I don't mind. I can handle whatever comes my way for the sake of my little one; as long as the baby is healthy, that's all that matters. Anyway, that’s all for now. I have a follow-up with my neurologist in my eighth month, so I’ll be sure to let you know how that goes...
Just checking in briefly; I’ve been away from here for about three weeks. Things haven't changed much—everything is stable, and I’m feeling quite good. As for the Mestinon and its associated symptoms, they are still a bit more pronounced than they were before my pregnancy, but I’m taking 4 Mestinon daily and it seems to be working well. I wouldn't say I'm up for any intense physical activity, but I’m functioning perfectly fine; I head into town, do my shopping, go for walks, handle all the usual housework, play with my nieces, and so on. All in all, I’m satisfied. Regarding the pregnancy, I saw my OB-GYN yesterday and everything looks great, thank God. We did an ultrasound, and the baby is developing beautifully and growing exactly as expected—the doctor says everything is "textbook!" I am absolutely overjoyed; that is what matters most to me. Oh, and one more thing: it’s a boy 🙂 He made himself very clear on the ultrasound, both to the doctor and to me. There’s no doubt about it; you could see it from a plane, haha 😍 So, everything is going well, though the only thing bothering me lately is some joint pain—mostly in both knees and my right hip. I wonder if that might be related to the weight gain? Perhaps the knees are struggling a bit more with the extra load, especially since my muscles feel a little weaker? Well, no matter, I suppose that will pass too. Anyway, I just wanted to share the latest updates 🙂 Best regards!
Hello everyone, I’ve finally decided to start sharing my thoughts here as well. Just to give you all an immediate update: my myasthenia has stabilized, and I am feeling quite like myself again. I am currently thirteen weeks pregnant, and about two weeks ago, those constant, all-day bouts of nausea finally subsided—coincidentally, that seems to be when my myasthenia decided to "behave" itself. 🙂 I feel significantly better, almost as if my energy levels have returned to their former state. For instance, I used to struggle just to stand for any length of time, let alone walk; everything felt like such an uphill battle. Now, things feel much closer to how they were before the pregnancy began. Regarding my medication, I find I only need that fourth dose of Mestinon occasionally now; most days, I am back down to three doses, which feels just right. While I wouldn't call myself particularly active—I still make sure to avoid any heavy physical exertion—I can go for walks and handle my daily chores and grocery shopping without any significant issues. As for the pregnancy itself, everything is progressing beautifully. I had an appointment with my OBGYN yesterday for an ultrasound, and he confirmed that the baby is developing perfectly, everything is "by the book," so to speak. I am absolutely thrilled. He even mentioned that my myasthenia isn't a direct indication for a C-section, suggesting that I might actually be able to deliver naturally. The plan is to attempt a vaginal birth first, and if things don't progress, then we pivot to a C-section. Of course, this means everyone needs to be prepared for that possibility—having the anesthesiologist and the rest of the surgical team ready to step in immediately should we need to move quickly. But that is still quite a long way off; we shall see. Honestly, I am torn; a C-section isn't exactly a walk in the park either, and while I would love a natural birth, there is that lingering fear—what if the labor starts and I simply run out of strength while waiting for the anesthesia to take effect? I suppose I will have to wait until my next check-up at Petrov Hospital to get more clarity from my doctor. The most important thing is that everything is fine for now, and I truly hope it stays that way until the end. I have also completed all my blood work and thyroid hormone tests related to the myasthenia, and every single result came back normal. So, for the moment, I am feeling very content, calm, and am simply enjoying this blissful "second trimester." 🙂
I wanted to let you all know that my myasthenia has taken a turn for the worse again. 😢 After that initial dip, I actually had a few wonderful days where I truly thought things had finally stabilized, but clearly, I was mistaken. It’s almost funny, in a grim sort of way—just when I told my neurologist that I was feeling better, everything went south a few days later. I haven't reached out to her just yet because she gave me specific instructions: if things decline, try stepping up to a fourth dose of Mestinon first. If that doesn't do the trick after a bit, then I should call and come in to figure out our next move. So, for the last couple of days, I've been on four doses of Mestinon, and it does seem to be helping, so we shall see. I know it isn't the end of the world; it's not an overwhelming amount of pills, and my doctor reassured me that Mestinon won't harm the baby. But what can you do? If this is what needs to happen, then so be it. I should probably mention that this flare-up feels more intense than anything I've experienced before; it's starting to affect muscles that have stayed fine until now—my jaw, my lips, even my breathing. I think it's more appropriate to share those specifics over in the myasthenia thread rather than here. For now, though, the baby and I are hanging in there, leaning on each other and pushing forward. 🙂
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. 👍
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. 👋
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.
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? 🙂🙂🙂🙂🙂