Hello!
I am newly diagnosed with MG ( ACHr positive, MUSK negative). My story started about 1 year ago when I started having double vision and eye lid drooping. These symptoms waxed and waned for a few months before I went to the doctor. After seeing 2 opthamologists, my pcp, and finally a neuro I was diagnosed in Feb. Unfortunately, at this same time I realized I was pregnant. My regular neuro says my symptoms are mild and she did not want to start me on medication and referred me on to a neuromuscular specialist. My appointment with him is not until April.
I have been extremely frustrated over that past few weeks because my OB is pretty much not familiar with MG, I saw a MFM specialist who pretty much gave me no information and told me what I already know ( That MG can be unpredictable in pregnancy, can cause transient neonatal MG, etc). They told me to just follow up with my neuro. The regular neuro seemed not knowledgeable about MG and pregnancy and that is why she referred my to the specialist. I feel like nobody is giving me any answers and they keep brushing off my concerns. My last bit of hope is that this neuromuscular doc knows what he is doing. I live in Pittsburgh with some nationally recognized hospitals and I cannot believe the run around I am getting.
I am looking for any advice and support. And also if anyone has been pregnant with MG I would love to hear from you! Finally, anyone in the Pittsburgh area???
Thanks in advance

I am so sorry you are getting the run around!! If you read through some of the posts here you will see that it is not at all uncommon but certainly doesn't make it easier. One of the really frustrating parts of MG is that so many drs are unfamiliar with it.

I hope someone here can help you from a pregnancy perspective. Pls keep us posted and message me if you need anything.

Stay strong!

Thanks,
I am doing my best to stay strong. There are just so many unknowns for me at this point that it is really testing my ability to stay positive. I am hoping that my appointment with the neuromuscular specialist in a few weeks will provide me with at least a "game plan" of what I can expect.

The MG Manual address pregnancy issues:

Myasthenia may improve, worsen, or remain unchanged during pregnancy and it is not uncommon for the first symptoms of MG to begin during pregnancy or postpartum.

Myasthenia Gravis: A Manual for the Health Care Provider (PDF) - page 25

The MG Manual is free for download. It is a PDF document and provides many answers about MG.

If you search the MG Forum for "pregnancy" and "pregnant" you will read posts on the topic.

-Mark-

polprncss, Welcome!

I'm sure you must feel overwhelmed, and not having a doctor who can adequately reassure you or guide you must be very frustrating.

Mestinon's effects on pregnancy has not been studied thoroughly enough (see pdf below). It is the least damaging drugs of all of the MG drugs, but that doesn't mean it wouldn't hurt your child.

They should, however, have it handy for you after you give birth, if necessary. But, then again, if you're breast feeding, the drug could still make its way into your child!

The things that you can do are to rest a lot, and to not overdo any activity. Managing MG without drugs requires lowering the amount of activities you do, plus alternating with lying down or taking naps. It's absolutely necessary, if you want to avoid becoming worse.

It's the old "don't stand when you can sit, don't sit when you can lie down" thing.

Since we're coming up on spring/summer, you should know that heat can make MG exponentially worse. Staying cool is vitally important. Don't be out in the sun or heat if you don't need to.

Also, socializing is very taxing. It uses up more muscles at a time and creates a greater "load" of weakness on the skeletal muscles, of which we have 640! Sitting and talking might not seem like a big deal, but it is!

You're not supposed to have caffeine while pregnant either, so I can't recommend that! Caffeine does what Mestinon does, to a varying degree. They are both called "cholinesterase inhibitors," and block the enzyme that mops up after acetylcholine (neurotransmitter muscle gas) when its done making muscles strong. They help us to keep using that muscle gas for a longer period of time.

I don't know a great doctor in your area. I believe some people here are from that area. Maybe you could do a separate post with that in the title.

It might be useful for you to see a pulmonologist for baseline breathing tests, such as MIP and MEP, which are specific to a neuromuscular disease. Being pregnant can be hard on breathing for healthy people. You might need to redo the tests later on if you are short of breath.

Also, having an oximeter might help with your peace of mind. When MG gets worse, the O2 often goes down. Keeping track of that could help you to monitor any changes.

If there's anything else you want to ask or talk about, please do. MG has a big learning curve and there are a lot of knowledgeable and kind people here.

I hope everything goes well at your appt., and you get the answers you need!

Annie

Attached Files

Mestinon_Suspension_60mg-Tablet_60-180mg_PI_May01.pdf (38.7 KB, 36 views)

Please stay strong, I think things can turn out OK for you and your baby. It's common for expecting mothers with MG to do just fine and require no special care. The problem is that right now, you don't know if you are doing everything you can do. The fact that many docs don't know much about MG makes that situation worse.

I searched hospitals in Pittsburg and found that UPMC has a 'high risk' obstetric unit. I'm not saying you are high risk. I don't know that at all. I'm just suggesting you might want to avoid having a neuro, who doesn't know obstetrics and an obstetrician who doesn't know MG.

I saw this type of unit perform miracles at another hospital. They were able to take a full view of both the mother and the baby. They coordinated docs from other practice areas to decide what must happen to have the best outcome for mother and baby.

http://www.upmc.com/locations/hospit...s/default.aspx

I wish you and your baby the best. I think you'll both be fine. Don't be afraid to advocate for the best, coordinated care you can find.

I'd like to recommend a little caution here. There are many drugs that haven't been studied enough to determine whether they're harmful to the baby. But this is a discussion you should have with your neurologist--don't just decide to "play it safe" and not take any drugs, because sometimes not taking the drugs is also a risk to the baby. In that case, you have to decide which risk seems to be smaller.

Spending much of your pregnancy sitting and lying down is good MG advice, but that's not risk-free, either--for you or for the baby. If Mestinon allows you to be more active, you will have to weigh the risks of Mestinon against the risks of inactivity. Similarly, if Mestinon gets into your breast milk, you have to weigh the risks of the baby getting tiny amounts against the risks of not breastfeeding. Then there's the risk of giving up Mestinon so you can breastfeed, and ending up too sick to breastfeed anyway because of the lack of Mestinon. The choice isn't so clear that one decision is completely unreasonable.

As for caffeine, the current guidelines say that one cup per day is safe for the baby: http://www.webmd.com/baby/news/20100...k-in-pregnancy . I respect mothers who don't want to take even that risk--but if caffeine helps you to be strong, that strength can help the baby. We're weighing small risks against small risks. Either decision is within the realm of reason. I used caffeine during pregnancies because it helped my migraines, and seemed safer for the baby than other drugs. I don't think it's healthy for the baby if the mother's in chronic, intense pain, either.

Believe me, I understand the importance of protecting the baby, at all costs! It's a loving mother who's willing to sacrifice her own health for the sake of her baby's. But sometimes these sacrifices are unnecessary, or even harmful to the baby.

In the end, you won't have enough information to make an infallible decision, but you'll have enough information to make a reasonable decision, which is all you need to do. I'm just saying, don't rule anything out without talking to your doctor about it.

Abby

Abby, No one is saying to do this or that. She's a newbie, and I believe we are all expressing caution AND saying to talk to her doctors. The problem is that her doctors are not talking to each other and giving her any guidance.

Of course all of us would trust our instincts and work out what is best with our doctors.

I don't think what you're saying is really contradicting what we are, only fine tuning a few things. And I'm pretty sure we could find studies on both sides of any stance, no matter the issue, which is beyond frustrating when a person wants to do what's best for their child!

And who among us would not like to be more active?! The exception to her situation is that she is not on drugs yet! Being sedentary isn't a great way to go, but neither is an MG crisis.

Annie

Hi, Annie. I see that I over-reacted to what you said. You weren't telling her not to take drugs, or not to stay active. I am sorry for responding as if you were. It was unfair of me.

Here is why I reacted so strongly to what you did say. I have seen women suffer needlessly, and even harm their babies, by assuming that no drugs is always better for their babies. I've seen this especially with thyroid troubles. I know women who refused to take their Synthroid during pregnancy for fear that it could hurt the baby. So your suggestion that Mestinon could hurt the baby triggered all that old frustration. You didn't say anything false--it's true that the effects of Mestinon on the baby aren't known. But I wanted to emphasize the other side. I should have done that without framing my response as a disagreement with you.

Abby

Thank you all for the positive encouragement and the great information. Mark, I printed off the document you attached and I plan on taking it with me to the neuro ( with questions of course) next month. Unfortunately, sometimes the more I read, the more nervous I get about all of this because there seems to be a lot of doom and gloom type stories out there as well as many unknowns ( which I am not too good at dealing with). That being said, it is nice to be armed with information :-)
As far as the meds go, I have an advantage in that regards because I am a pharmacist. I know that not one med used for MG is 100% safe in pregnancy. They are all category C and below. If I end up needing symptom control, I do feel comfortable taking a low dose of Mestinon as many of the studies and publications I have read indicate problems at higher doses.
Thank you gr8ful for the hospital info… my doctors are all part of the UPMC system so hopefully they will be able to coordinate amongst each other the best course of treatment for me. I have decided to leave my regular OB at this time and switch to a high risk OB group that is part of the hospital where I will deliver ( also UPMC). They are pretty on top of things and the doctors actually seem pretty knowledgeable about pregnant women with various autoimmune diseases. My regular OB just seemed kind of clueless and was not eager to answer any question I had regarding the MG and how it related to pregnancy.
I am trying to take it day by day for now and I will keep you all updated!