[mvoyvodich]

have any of you been pregnant while you had MG? my clock is beyond ticking it's like an alarm going off. from what i read it says there effects are variable could be 1/3 change stay the same, 1/3 chance get worse, or 1/3 chance you get better. what has your experience been? would anyone suggest to not have children? i'm just taking in opions and would like to hear yours.

[MzTracey]

I actually went through the same dilema. I wanted to have my own children and at one point being in my early twentys I was willing to risk it all just to be a mom. Through the years after talking to my neurologist as well as family dr, and perinatologist, I was told not to take the chance at all especially because I am on Imuran which can cause fetal deformaties (Also have had many difficulties with my MG through the years) I was very upset for years about this news but decided that I wasnt getting any younger and now that I was in my early 30s if I was going be a mom its the time to figure out what I was going to do. And so I decided.... Almost 2 years ago I became a foster mom to an 8 month old little boy and we were able to adopt him this past August. I am very happy with the choice I made. Although he's not mine biologically I still am his "MOM". There are so many kids out there who need someone to love them and now my son has me and I didnt have to risk my own health to have him Hope I helped...
-Tracey

[sugrkiss]

I was 4 days post partum when I was diagnosed with MG. In the 8th month of my pregnancy I started having symptoms in my lips and couldn't drink out of a water bottle, then it spread to my arms and breathing. By the time I went into labor, I could hardly breath, and couldn't push. He is my third son, and his birth was extremely traumatic. The dr had to use the vaccume, and a nurse was on top of my stomach pushing from the outside. I was crying and begging them to let me try different positions, telling them that I couldn't breath and something was wrong. Nobody knew that I was telling the truth, they all figured I was just tired from labor and behaving badly. My son was blue when he was born because he was stuck in the birth canal for so long, I had managed to push him halfway out, before my muscle gave up. He is healthy now thank god...But immediately after his birth, I went crashing downhill. I couldn't lift my newborn 7lb baby to nurse him. I had a terrible cough that I couldn't get out, because my stomach acid was coming up in my sleep and moving into my lungs, later I learned that the cough (which came out of nowhere) was pnemonia. The day after I was sent home from the hospital, I couldn't get out of bed, my husband spent the day calling life insurace companies because we thought I was dying.
Back track 3 months...when the symptoms started I was getting dental work done, so I attributed my mouth weakness to that. My mother has muscular dystrophy, so I thought the arm weakness was from that, and feeling breathless is a symptom from late pregnancy...so when I was laying in bed with my 2 day old son, I thought I had a tumor or something. I had spent hours and hours researching my symptoms before the baby came, and once I actually happened across MG, but mine didn't get better with rest, so I dismissed it. I saw my PCP and had a referral to a nuerologist, but they didn't want to see me until after the baby was born. So first thing on monday 3 days postpartem my husband got my a emergency appt with the nuerologist. The morning that I saw him my eye started drooping. He gave me mestinon and took blood, he didn't do the tensilon test and told me if he was right I had MG, and the medicine might take a couple weeks to work, and hopefully he would have the bloodwork back by then. That night after taking the mestinon, I felt like Super woman, I could breath and cough, and even put my hair in a ponytail! My husband called him the next morning to let him know how well it worked and I got my diagnosis...
My medication is still a work in progress, and it took months to figure out how to keep me from crashing as the meds wore off, and I was so weak the first year I couldn't take care of my kids. My husband and mother in law took over everything, including bathing me sometimes.
According to my nuero, pregnancy is like an immune suppressant...so near the end it starts eeking back and when the baby is born, it rushes back. I was so depressed at not being able to care for myself or my children, I actually considered adoption for the baby for about a half a second...

I just wanted you to hear my story since it's directly related to your question. I wasn't being treated during my pregnancy and I didn't know about my disease, or maybe things would have been easier. I think I have traced symptoms back to at least 6 months before I got pregnant tho. I know that a lot of our medications are not safe to take during pregnancy, so that might be your first test, if you can go without those for a while before you try?

But if your like me, and you crash after giving birth, you'll hate yourself for not being able to take care of the baby...If your stable and able to keep up with the demands of a household, I think adoption would be a wonderful idea. After I was diagnosed my husband got a vasectomy...there is no way I can go through another pregnancy, I was about one day from a ventilator when I got diagnosed, and even with the meds, I wasn't stable for so long, my husband used to wake up all night to make sure I was still breathing, I was afraid to be alone. It was horrible. In few years if I'm stable and can take care of the house work and stuff again (I still can't vaccumme or fold laundry, and I'm totally OCD about my house...so just watching all the housework I can't do is a struggle), we are going to adopt a 2-3 year old, and skip the physically trying baby stage.

Thank for reading if you managed to get through this whole, I hope it helped. I pray this finds you strong.

Jessica

[mvoyvodich]

hi jessica,

thank you for sharing your story. it's incredible. you went through a lot and are still strong as ever. for myself, the part i do worry about is after pregnancy, being able to hold the baby. since i know before hand that i have it i would request a c-section. because like you i know i could not push to get the baby out. you've given me a lot to think about in terms of my support system. i am kind of fuddy duddy about asking for help. i dont like to. but i can accept it from people like my mom and sister.

and oddly enough right before i got sick, i thought i found my life purpose: to be a foster parent. my plan was to adopt any kids that didn't find good homes. oddly enough a couple of weeks later i starting getting sick. weird huh.

Originally Posted by sugrkiss

I was 4 days post partum when I was diagnosed with MG. In the 8th month of my pregnancy I started having symptoms in my lips and couldn't drink out of a water bottle, then it spread to my arms and breathing. By the time I went into labor, I could hardly breath, and couldn't push. He is my third son, and his birth was extremely traumatic. The dr had to use the vaccume, and a nurse was on top of my stomach pushing from the outside. I was crying and begging them to let me try different positions, telling them that I couldn't breath and something was wrong. Nobody knew that I was telling the truth, they all figured I was just tired from labor and behaving badly. My son was blue when he was born because he was stuck in the birth canal for so long, I had managed to push him halfway out, before my muscle gave up. He is healthy now thank god...But immediately after his birth, I went crashing downhill. I couldn't lift my newborn 7lb baby to nurse him. I had a terrible cough that I couldn't get out, because my stomach acid was coming up in my sleep and moving into my lungs, later I learned that the cough (which came out of nowhere) was pnemonia. The day after I was sent home from the hospital, I couldn't get out of bed, my husband spent the day calling life insurace companies because we thought I was dying.
Back track 3 months...when the symptoms started I was getting dental work done, so I attributed my mouth weakness to that. My mother has muscular dystrophy, so I thought the arm weakness was from that, and feeling breathless is a symptom from late pregnancy...so when I was laying in bed with my 2 day old son, I thought I had a tumor or something. I had spent hours and hours researching my symptoms before the baby came, and once I actually happened across MG, but mine didn't get better with rest, so I dismissed it. I saw my PCP and had a referral to a nuerologist, but they didn't want to see me until after the baby was born. So first thing on monday 3 days postpartem my husband got my a emergency appt with the nuerologist. The morning that I saw him my eye started drooping. He gave me mestinon and took blood, he didn't do the tensilon test and told me if he was right I had MG, and the medicine might take a couple weeks to work, and hopefully he would have the bloodwork back by then. That night after taking the mestinon, I felt like Super woman, I could breath and cough, and even put my hair in a ponytail! My husband called him the next morning to let him know how well it worked and I got my diagnosis...
My medication is still a work in progress, and it took months to figure out how to keep me from crashing as the meds wore off, and I was so weak the first year I couldn't take care of my kids. My husband and mother in law took over everything, including bathing me sometimes.
According to my nuero, pregnancy is like an immune suppressant...so near the end it starts eeking back and when the baby is born, it rushes back. I was so depressed at not being able to care for myself or my children, I actually considered adoption for the baby for about a half a second...

I just wanted you to hear my story since it's directly related to your question. I wasn't being treated during my pregnancy and I didn't know about my disease, or maybe things would have been easier. I think I have traced symptoms back to at least 6 months before I got pregnant tho. I know that a lot of our medications are not safe to take during pregnancy, so that might be your first test, if you can go without those for a while before you try?

But if your like me, and you crash after giving birth, you'll hate yourself for not being able to take care of the baby...If your stable and able to keep up with the demands of a household, I think adoption would be a wonderful idea. After I was diagnosed my husband got a vasectomy...there is no way I can go through another pregnancy, I was about one day from a ventilator when I got diagnosed, and even with the meds, I wasn't stable for so long, my husband used to wake up all night to make sure I was still breathing, I was afraid to be alone. It was horrible. In few years if I'm stable and can take care of the house work and stuff again (I still can't vaccumme or fold laundry, and I'm totally OCD about my house...so just watching all the housework I can't do is a struggle), we are going to adopt a 2-3 year old, and skip the physically trying baby stage.

Thank for reading if you managed to get through this whole, I hope it helped. I pray this finds you strong.

Jessica