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Old 01-20-2011, 01:34 PM
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sugrkiss sugrkiss is offline
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Join Date: Sep 2009
Location: Orange County, CA
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15 yr Member
sugrkiss sugrkiss is offline
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Join Date: Sep 2009
Location: Orange County, CA
Posts: 112
15 yr Member
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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
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"Thanks for this!" says:
Marin826 (02-03-2011)