Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
Hello everyone!
I am 22 and was diagnosed with mg last July a week after my wedding and I was 12 weeks along with a little girl. I went to the walk in a couple months before that for this mysterious and severe weakness that had seemed to creep up on me and was sent to a neurologist who blamed it on the pregnancy and suggested I eat more protein. It only got worse and by the time my wedding came around I could barely open my eyes, there isn't a signle photo of me smiling, and I had a very hard time chewing. My aunt happens to be a doc and she suggested finding a new neurologist and thought mg was the problem. So, I finally got diagnosed and found a neurologist that I love. He found me a good ob and together they helped me through my pregnancy and I was able to have my baby girl, though it was rough and she had neonatal mg but that's a story for another day.
We are all home now safe and sound but I ak struggling to take care of my 10 week old with my mg. I am on a heavy dose of prednisone and mestinon but I still get extremely weak. My neurologist is working on weaning me off the prednisone because the surgeon won't do a a thyectomy on me while on 60 miligrams of that. So I won't be having surgery until the fall. I am wondering if there are any other moms out there who have gone or are going through this. It kills me when I can't pick her up on my own or do the simple mom things I should just be able to do. It has been a really rough year and I know there are many to come. I am just looking for light at the end of this tunnel.
I am 22 and was diagnosed with mg last July a week after my wedding and I was 12 weeks along with a little girl. I went to the walk in a couple months before that for this mysterious and severe weakness that had seemed to creep up on me and was sent to a neurologist who blamed it on the pregnancy and suggested I eat more protein. It only got worse and by the time my wedding came around I could barely open my eyes, there isn't a signle photo of me smiling, and I had a very hard time chewing. My aunt happens to be a doc and she suggested finding a new neurologist and thought mg was the problem. So, I finally got diagnosed and found a neurologist that I love. He found me a good ob and together they helped me through my pregnancy and I was able to have my baby girl, though it was rough and she had neonatal mg but that's a story for another day.
We are all home now safe and sound but I ak struggling to take care of my 10 week old with my mg. I am on a heavy dose of prednisone and mestinon but I still get extremely weak. My neurologist is working on weaning me off the prednisone because the surgeon won't do a a thyectomy on me while on 60 miligrams of that. So I won't be having surgery until the fall. I am wondering if there are any other moms out there who have gone or are going through this. It kills me when I can't pick her up on my own or do the simple mom things I should just be able to do. It has been a really rough year and I know there are many to come. I am just looking for light at the end of this tunnel.
Having said that, welcome to our little family of MG'ers. This is a great site with so many experienced and wise people. Everyone here is supportive and caring so please feel free to ask any questions or address any concerns that you may have.
It's really good to know that you have found a good neurologist and OB that are working out well for you. That is the ultimate accomplishment with this disease and is something that many still haven't found.
As for not being able to do the simplest things for your daughter, the key to this disease really is finding alternative ways of doing things that use to come so easily to you. There are ways to pick up your child where you can use the strength of other parts of your body to get the job done. They have those baby slingy-things that cradle your baby for you. If you can put that under your little girl while she is laying down and use the strength of your back and shoulders (along with your arms) the strain might not be as bad. You have to really know your limitations though and stop while you are ahead (if that's possible). If you can find alternatives to picking her up to soothe her, you can save your strength for the times when it just has to be done. For example, when she is crying in her crib and you want to pick her up... instead, get a pillow on the floor next to her crib, put your arms in there, pat her back and cradle her head so that she knows that you are there and you are able to provide the comfort that she needs but without using up all of your strength to do so. That's just the first thing that came to my mind but I'm not a mom so I'm sure that there are millions of other scenarios that actual parents can give their input on too.
I just wanted to let you know that a good part of living with this disease is finding alternative ways to accomplish things. It may not get you exactly the same result as prior to MG but it can either get you close to it or enough of a solution that you can live with it and your daughter isn't slighted in any way.
Always remember to conserve your strength for the necessary things such as changing clothes/diapers, feeding and bathing. Also, if you have any family or friends that are available to help you it is best to ask for help when you need it. Most people can understand the fatigue that comes with being a new mom so maybe you can play that bit up, if necessary. Sadly, most people do not see or understand this disease even after a thorough explanation. So people are going to say things like, "Oh, you look great" or "You look fine to me". It's the nature of the invisible disease so you may need to tell people that you've had a rough couple of days because the baby is up frequently. That could be a great excuse to get people over to watch the baby while you take a much needed nap. Creativity can help when you need to ask others for a hand. Don't be ashamed to ask for help when needed because the alternative is that you over work yourself and make matters worse for you and your little girl.
Please keep us posted on how you and your little girl are doing. Take care of yourself and big hugs to you both.
Aloha,
Angie
P.S. Where do you live? Country... Province, State, etc.
Also, how supportive has your husband and other family members been in helping you with the baby?
- Get a baby carrier. This was critical for me when my arms were too weak to hold my baby, but she was crying and needed comfort. I would sometimes even wear her while sitting (because who has the energy to stand?), which still helped me hold her without as much muscle effort. It's not magic - body will still fatigue, but better than nothing and really helped when I was afraid I'd drop my baby. (never did, but as a new mom, of course you worry!) You will probably do best with a soft structured carrier like an Ergo or Beco Gemini, because they have buckles that make them fast and easy to get on (my arms were too weak to wrangle with wraps, etc). There are local baby wearing clubs that may be able to help you try one on, get it set up properly, find an inexpensive used (but good condition) one, etc. Our local club has a lending library so I could check out a carrier for a month at a time and see if it would work for us before investing in buying one.
-The other critical choice we made those first six months was to keep our baby in a bassinet next to our bed (and we also practiced safe cosleeping to help facilitate breastfeeding, since I wasn't able to get up and feed her otherwise. I assume you're not breastfeeding since you're on such a high dose of prednisone, so I won't offer more tips on that, but let me know if my assumption is wrong and I can share more details). We had an arms reach Cosleeper, which attaches to your bed at mattress height and allows you to reach over and comfort baby during the night. We moved her into a crib at 6 months after she was able to sit up and the Cosleeper was no longer safe. They usually don't need as much attention at night by then either. :)
-Try to set up all the things you'll need for baby so that you have as little distance to travel as possible. While baby is little, you can put all your diapering stuff right next to wherever you have baby during the day, to minimize your movements.
-Ignore social media, Pinterest, baby stores, and everything else that tries to show you what a perfect motherhood experience should look like. We have some older friends who were so supportive and helpful in setting my perspective, as they remembered when people used to put babies in a spare dresser drawer, rather than creating some photo-spread worthy nursery. So much of our experience has been in learning how to find ways to have a good life, even if it looks totally different from what others have. You're very early in MG, so you are probably still going through that process. I also found the book Simplicity Parenting very helpful for cutting through all the expectations I had about parenthood, and giving practical ways to keep life more simple for your child (as well as scientific evidence as to why this actually creates healthier children, compared to what is typical in today's society of trying to do more more more). And MG demands simplicity!
-Ask for, and accept help. We had our parents live with us for 6 weeks after the birth of our girl, and they stay with us usually at least one week out of every month (not local). We have an amazing church and small group that have been so wonderful at bringing us meals, coming over on their days off to hold the baby or take her for a walk, etc.
Ok, There is plenty more I could say but hopefully this is a good place to get started. It might be easier to chat via phone on more specific questions or genera encouragement, which I would be very happy to do - new MG moms' support group? ;). Let me know if that would be helpful. Good luck, mama, and hang in there!!
For feeding and holding in early months: We found it helpful to build a pillow fortress on the couch for when I was sitting there feeding/holding the baby. Put pillows in strategic locations to make sure your arms are supported so you can hold baby without having to use much muscle effort. (To be honest, I did this even before I had the baby! Having all your muscles supported makes even lounging easier.) I also used something called the My Breast Friend pillow, which could be used for bottle feeding as well. It buckles around your torso and creates a firm elevated platform to hold baby up in a feeding position. Reduces muscle strain and effort. Had to stop using when baby became too heavy though.
Make a safe place: you have a few months before this is needed, but see if you can enlist your in-laws in helping think through how to set up a place in their home that can be totally baby-proofed. Once baby starts rolling/crawling/cruising/walking, it can be exhausting to try to keep up with them and keep them from getting into trouble. It has been a life saver for us to have an area where we can close in our daughter and she can explore or play but can't hurt herself. When I get too tired to keep up with her, I put her in that room and lie down on the floor. There are also things called play yards (lots of people sell them used on craigslist etc) that are big enough to put a mobile baby in for awhile, if you can't babyproof a room/area.
MG tends to hit younger women and older men (like me). Many of the young women do much better with a thymectomy, so that is the right direction.
Good Luck
Russ