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!

polprncss, That's great news to hear you found some docs that seem MG savvy. Sorry you are having trouble with some of the doom and gloom stories on the internet. I also did in the beginning. One thing people here told me is worth mentioning. There seems to be a tendency for people with more difficult MG cases to post and for those posts to be more closely followed. For people with milder cases that respond well to meds, they're busy living their lives. There are plenty of people who manage their MG and live normal lives.

It's just plain scary to be diagnosed with a rare and fluctuating disease. The odds are that you and your baby will be just fine but getting used to the situation is no fun. Try not to worry since that really does make symptoms worse. Good luck with your new docs. It sounds like a great plan.

polprncss, I'm glad you are getting closer to the care you deserve.

Doom and gloom? MG isn't easy, but that certainly doesn't mean we're all sitting on death row. My life is greatly diminished, but that's only because I can't do a drug other than Mestinon. But there are a lot of people who function more highly and whose lives are a bit more close to "normal," whatever that means.

Abby, I appreciate you, and your comments. Whether to have a treatment or not is such a personal choice, and there are always individual factors that none of us can know about. And I've known people who would rather take Synthroid than trying drugs like Armour Thyroid or Nature-Throid. We both probably have umpteen examples of medical situations where people did not take as good care of themselves as they probably should have. But it's not for me to say!

I think what can be taken away from everyone here is that caution is useful, great doctors are too, and informing yourself about MG as much as you can is your best tool in living with it.

I'm sure you'll do great, polprncss!!! Enjoy this amazing time being pregnant.

Annie

I was pregnant after being diagnosed with MG a year prior. I had a wonderful healthy baby boy who has had no issues related to MG in his 3 years. I will highlight certain features from my experience that may help you:
-I had monthly scans at the high risk perinatologist, made my OB feel better about something they had no idea how to deal with. Eased my mind to see the baby doing healthy each time.
-When he was born he did spend a week in NICU but that is due to his being born a month early for unknown placenta previa which had nothing to do with the MG
-the OB, pediatrician at hospital, nurses all were on extra alert to be on the lookout for any issues from him after birth such as issue breathing, weakness, etc. If anything he was strong, he kept pulling out the nasal cannula(air) and other tubes.
-I was told by my neuro NOT to let them use a certain type of saline IV which I do not remember now but at the time I let everyone know(hospital, ob, neuro, etc) and also carried around a list of meds to avoid for MG with me at all times. There are some that can have more adverse reactions depending on each individual. I personally cannot have anything in the quinolone antibiotic family or it makes me feel awful. I do not come here often but if you have any questions I have it set for members can email me and will try to answer. Good luck and honestly, the MG side effects almost dissappeared during my pregnancy. That part was awesome and apparently it does happen to others out there with MG. I have not been on a continual dose of mestinon since mostly due to stubborness and hating the mestinon side effects. I just take it as needed here and there which is okay with my dr. Currently having an episode which prompted me to take mestinon again after 2 weeks of suffering.