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Grand Magnate
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Join Date: Feb 2009
Posts: 3,306
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Grand Magnate
Join Date: Feb 2009
Posts: 3,306
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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
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