Hi everybody,

I am wondering if any women on this site have gone through a pregnancy and/or childbirth, and/or parenting with MG? I don't have a diagnosis yet adn am antibody negative, but I sure have a lot of the symptoms, if intermittently, so am going to get a second opinion from another neuro.

I am 41 and am considering having a child within the next couple of years. I have some wonderful support around me, and I know MG and pregnancy can be a risky combo but I have also heard from 2 doctors that it can go into permanent remission via pregnancy, most likely because of the "immune system reboot" that happens when a woman's system changes to avoid rejecting the new life form as foreign. Has anyone experienced this?

I'd love to hear from any women who have experiences they'd be open to sharing, either here, or via personal message. I really want to make the right choice here... thank you.

T

Hi

My symptoms first started 9 and a half years ago, when it started the symptoms were constantly fluctuating daily for nearly 2 years and then became less severe and more intermittent. I did not get a diagnosis at that time as I am seronegative so I went on blissfully unaware to becoming pregnant....twice, both completely unplanned!! I have to say I felt really good in both pregnancies, I had very occasional symptoms during and after my first pregnancy (2-3 very mild flare ups of facial droop) but my second pregnancy knocked it out completely for 3 years!!! My MG flared up again in Feb if this year and I finally got my diagnosis - my Neuro also said falling pregnant would be fine on mestinon and I am also considering trying for another baby in the next couple of years....and hoping for the same result as last time!!

Good Luck with everything
Eve.x

[QUOTE=Unsure81;1022976]Hi

My symptoms first started 9 and a half years ago, when it started the symptoms were constantly fluctuating daily for nearly 2 years and then became less severe and more intermittent. I did not get a diagnosis at that time as I am seronegative so I went on blissfully unaware to becoming pregnant....twice, both completely unplanned!! I have to say I felt really good in both pregnancies, I had very occasional symptoms during and after my first pregnancy (2-3 very mild flare ups of facial droop) but my second pregnancy knocked it out completely for 3 years!!! My MG flared up again in Feb if this year and I finally got my diagnosis - my Neuro also said falling pregnant would be fine on mestinon and I am also considering trying for another baby in the next couple of years....and hoping for the same result as last time!!

Good Luck with everything


Thanks for sharing, Eve.. and congratulations! I'm glad to know things have improved for you. When you were diagnosed this year, was it because you had antibodies now detectable, or was it via muscle nerve fibre testing? I am also curious if you had severe weakness as well as facial paralysis?

No, I am still seronegative for both AChR and MuSK antibodies. I had an EMG which was unremarkable but have been diagnosed on Clinical Symptoms, Ice Test and response to Mestinon. My Neuro said we could do a SFEMG but as my predominant weakness is eye and facial he felt it was a lot to put me through and not necessary....which I am grateful for!! My symptoms are mainly eye droop and facial droop but I do also have intermittent weakness in my legs, neck, breathing and swallowing.....and occasionally my arms.

I wish I could be more help, It is a big decision and one I would be nervous about making myself despite my positive experience! I'm not sure what antibodies you have and I suppose it would be more reassuring if I was in the same "group" as you - seronegative is a hard one! My Doctor told me at the time that our bodies produce the equivalent of steroids in pregnancy which can help a lot of illnesses - but I still feel its a gamble to put our bodies under the pressure of a pregnancy when they can become so weak normally. I am sure that we would be kept closely monitored and, at the end of the day, there are no guarantees in pregnancy...or life with or without MG?? Maybe we just have to take our chances, if we never try, we'll never know - and that's the only way to find out??

Good Luck - I hope you find the answers you need to make your decision

I had severe ocular MG and had a thymectomy. A year later I got pregnant and the pregnancy was wonderful due to the increase in natural steroids. About 8 weeks postpartum I started going downhill to where I had trouble breathing and walking. I was not able to take care of the baby as I could not lift him. I put him in an umbrella stroller and propped the bottle as I was too weak to hold him. This went on for about 2 years and I was put on massive doses of steroids which helped but had terrible side effects. Today my baby is a wonderful Dad and gave me beautiful grandchildren. I do not regret having tried but the emotional impact of not being able to care for my baby the way I wanted to was difficult. If you decide to go ahead make sure you have an excellent neurologist following you, especially postpartum. Have a strong support system at home that can help you out. I wish you luck in making this decision - being a Mom is the most wonderful thing in my life.

Oooh, this is a tough one.....

Since you are 41 and you are talking about becoming pregnant in "a couple of years", I assume you are talking about IVF. Unfortunately, most women over 35 are advised to use donor eggs for best results (at 43, your eggs will more than likely not result in a viable pregnancy). You don't say whether you are in a relationship right now - even if you used your own eggs, if you aren't in a relationship you will be taking a chance on the biological father's health/genetics.

The other thing that you have to look at is - sorry - your age.

ALL pregnancies in mothers over 35 are considered "high risk", regardless of the mother's health. There are very REAL reasons for this - talk to your gynecologist and get him/her to tell you what those reasons are (it's more than the risk of genetic defects in the baby).

As someone who got pregnant at 40 - quite a surprise, I must say - I can tell you 12 years later that it is VERY different from raising a child when you are in your 20s/30s. I was still fairly active at the time of our 4th child's birth, but I am now 53 and getting ready to stare down the teenage years (fortunately, she has Down syndrome, so her teen years shouldn't be as tumultuous as her sisters' were.....)

I was diagnosed with MG at the age of 50, but I had been feeling its effects - without realizing what it was - for many years earlier. I am too tired to go to my daughter's school functions. I am unable to volunteer at her school. By the time she is 18, I will be pushing 60, and I don't know what the future holds for me physically, other than that I am not going to have MORE energy than I do now.

You are talking about taking on the care and responsibility of a completely helpless child at an age when your reproductive system is starting to shut down (for a REASON). By the time this hypothetical child graduates from high school, you'll be old enough to start collecting Social Security.

I know you say that you have a "good support system" around you, but what if being pregnant has the opposite effect on you and you are in WORSE shape after the pregnancy? What if you become completely disabled? Have you given any thought to what that would mean to your child? Instead of you taking care of him/her, they would find themselves taking care of you at a time when they should be experiencing all of the joys of childhood.

And realistically, that would carry into their adult life as well, given what your age would be - that is an awfully large burden to place on a kid. If the worst were to happen and you were no longer around, are there people in your life who you would trust to raise your child for the rest of their life?

I am 53 years old. Thanks to MG, all of the plans that I had for when our older daughters left home will never be realized. I can no longer drive a car in town. I can't cook meals, nor can I do housework. I can't work in my garden. My 21-year-old daughter has to do the grocery shopping for me while my husband is at work. I am basically a great big doorstop.

According to my neurologist, I'm "Doing great!" compared to her other MG patients. If this is "great", I shudder to think what the rest of her patients are experiencing.....

I'm sorry to be such a downer - it is a joy to be pregnant and to have children, but you have some very harsh realities facing you. You HAVE to think about what this would mean to a future child. This decision CANNOT be based solely on what you desire; that is what being a parent is all about, after all.

Thanks so much for your kind thoughts and concerns, ladies!
Sorry to hear of the very difficult times you have had with this. I understand your concerns and wishes to spare me a similar situation.

Don't worry I am holding off on the idea of pregnancy for now.. just wanting to gather different information and perspectives. I don't want to take any unnecessary risks despite the possibility of remission I've heard about. It's not worth risking harm to myself or a little one at this point. I would have to have a lot more confidence in my health than I do at this time! I'm going to try and really heal with some radical lifestyle changes and perhaps down the road it could be possible.

Blessings to all, T