Pregnancy and CMS

I can only tell you my experiences with my three pregnancies as everyone with Myasthenia Gravis is different and we all react to things differently. My doctor did say, in general, if 3 women were pregnant and had MG, one's symptoms would become worse, one would remain the same and the other would feel better (almost close to remission). Here is my experience with MG and pregnancy…

My name is Cynthia Davidson; I live near Toronto, Ontario, Canada. I'm 31 years old, married and have three children (2 girls, 1 boy). First, a bit of my background: I have a rare form of Myasthenia Gravis called Congenital Myasthenic Syndrome (CMS or some refer to it as CMG). Although I do not have autoimmune Myasthenia Gravis, I was treated as such for a very long time (almost 10 years) and know more about the autoimmune MG than I do my own CMS. Mine is so rare that researchers have not yet been able to pin-point exactly what the problem is and can only tell me it is genetic, the gene for my type just hasn't been isolated yet (there are currently about dozen types of CMS that have been identified). I do present the same symptoms and many doctors still treat me (non-medication wise) as though I'm autoimmune. I was diagnosed at age 9 as if I had autoimmune MG. I had a thymectomy shortly after diagnosis and was put on Mesitnon, Prednisone, Potassium pills and had several (can't even count how many) sessions of plasmaphersis. This went on until I was seventeen years old. Doctors couldn't understand why nothing was working. I was sent to an expert at the Mayo Clinic in Rochester, Minnesota where it was determined I didn't have any circulating AChR antibodies and that I must have a Congenital form of the disease. I was finally weaned off Prednisone, no more Mestinon and no more sessions of Plasmaphersis. The doctor put me on Ephedrine which worked really well for many years, it was the only drug I had to take, once a day and for the most part, I was very near normal.

I became pregnant with my first child at age 19 (yes I was young). The doctors again knew nothing about CMS and pregnancy so I was treated as though I had autoimmune MG, many of the same precautions were taken. I was considered a high-risk pregnancy and attended a high-risk clinic in a teaching hospital near where I live. The pregnancy itself was great. I didn't have morning sickness, I was feeling strong and I looked wonderful. I took ephedrine throughout the pregnancy with no complications. The doctors were worried that I would not be strong enough to push the baby out on my own so they highly recommended an epidural just in case a c-section was necessary, this way they didn't need to give me general anesthetic. Although I did not need a c-section, forceps and vacuum (suction) were both needed to help. I recovered fairly quickly, within a month and the worst weakness was in my arms, I believe from grabbing onto things while trying to push.

My second pregnancy was OK. I experienced morning sickness for the first three months and ended up leaving work a month before I was scheduled to. I was quite weak by the end of the pregnancy, but surprisingly, the labor was much easier. They gave me some pitocin to get my contractions stronger hoping my uterus would do most of work before I began pushing. This did work, I was able to push on my own and although I pushed for a while, she came without any other invention. Again, I had an epidural, just in case. Again, my arms were the weakest part of my body afterwards. I was pretty emotional after as well because I always needed help to pick baby up. I tried breastfeeding but the doctors were a little hesitant to say OK because of the Ephedrine I was taking. The baby was very fussy for the first three weeks, which is when I gave up breastfeeding. Whether the baby was fussy because of the medication or if I just didn't try hard enough, it's hard to say. Don't forget I had a six year old who constantly wanted attention and put a bit of stress on feeding as well.

The third (and final) pregnancy was the worst. I was sick for four to five months and ended up on short-term disability for the last two to three months of the pregnancy because I was so weak. I was not comfortable driving, I rarely left the house and if I did, I always had to have someone with me. We learned the baby was breech at about 33 weeks and he was so comfy that way, he was not going to move. The options were c-section or trying an ECV (external cephalic version) maneuver at 35 weeks. I decided to try the ECV before having to resort to a c-section. The doctors repositioned baby by lubing up my belly and literally turning him into proper position. A couple of weeks later they induced me because I was so weak and felt I didn't need to be pregnant any longer (of course baby was fine to be delivered at this point). This was the quickest labor (only EIGHT hours!!) and smoothest delivery (or so I thought) but my husband told me later they were considering a c-section because I was becoming so exhausted. But I did it! And, again, my arms caused me the most problems. I always needed help picking baby up for a good couple of weeks following delivery. I was taking Ephedrine throughout this pregnancy and successfully breastfed for 9 months.

Now for the most interesting bit of all: I was great, strength-wise, while I breastfed. Once I stopped I went downhill. Ephedrine ceased to work any longer and I could barely do anything. It was to the point that I constantly needed help showering, using the bathroom and getting dressed. I ended up on disability again last year until I felt stable enough to go back to work. I'm now taking new medications, an experimental drug called 3,4 diaminopyridine and mestinon, together they give me the strength to get through the day. I am back at work full-time and the best thing we (the family) have done is hire a live-in caregiver. It's expensive but well worth it. I've been up and down with my CMS since I stopped breastfeeding and have not yet found a happy medium. I never know how I'm going to be until I wake in the morning. But I need to keep going to keep myself mentally stimulated and I refuse to go back on disability.

For more information please read the article "High Risk Pregnancy - Myasthenia Gravis" on the University of Utah Health Science Center Web site.

Reference address (http://uuhsc.utah.edu/healthinfo/pediatric/hrpregnant/automg.htm)

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	Pregnancy and Congenital Myasthenic Syndrome - A Personal Story By Cynthia Davidson April 2005

	I can only tell you my experiences with my three pregnancies as everyone with Myasthenia Gravis is different and we all react to things differently. My doctor did say, in general, if 3 women were pregnant and had MG, one's symptoms would become worse, one would remain the same and the other would feel better (almost close to remission). Here is my experience with MG and pregnancy… My name is Cynthia Davidson; I live near Toronto, Ontario, Canada. I'm 31 years old, married and have three children (2 girls, 1 boy). First, a bit of my background: I have a rare form of Myasthenia Gravis called Congenital Myasthenic Syndrome (CMS or some refer to it as CMG). Although I do not have autoimmune Myasthenia Gravis, I was treated as such for a very long time (almost 10 years) and know more about the autoimmune MG than I do my own CMS. Mine is so rare that researchers have not yet been able to pin-point exactly what the problem is and can only tell me it is genetic, the gene for my type just hasn't been isolated yet (there are currently about dozen types of CMS that have been identified). I do present the same symptoms and many doctors still treat me (non-medication wise) as though I'm autoimmune. I was diagnosed at age 9 as if I had autoimmune MG. I had a thymectomy shortly after diagnosis and was put on Mesitnon, Prednisone, Potassium pills and had several (can't even count how many) sessions of plasmaphersis. This went on until I was seventeen years old. Doctors couldn't understand why nothing was working. I was sent to an expert at the Mayo Clinic in Rochester, Minnesota where it was determined I didn't have any circulating AChR antibodies and that I must have a Congenital form of the disease. I was finally weaned off Prednisone, no more Mestinon and no more sessions of Plasmaphersis. The doctor put me on Ephedrine which worked really well for many years, it was the only drug I had to take, once a day and for the most part, I was very near normal. I became pregnant with my first child at age 19 (yes I was young). The doctors again knew nothing about CMS and pregnancy so I was treated as though I had autoimmune MG, many of the same precautions were taken. I was considered a high-risk pregnancy and attended a high-risk clinic in a teaching hospital near where I live. The pregnancy itself was great. I didn't have morning sickness, I was feeling strong and I looked wonderful. I took ephedrine throughout the pregnancy with no complications. The doctors were worried that I would not be strong enough to push the baby out on my own so they highly recommended an epidural just in case a c-section was necessary, this way they didn't need to give me general anesthetic. Although I did not need a c-section, forceps and vacuum (suction) were both needed to help. I recovered fairly quickly, within a month and the worst weakness was in my arms, I believe from grabbing onto things while trying to push. My second pregnancy was OK. I experienced morning sickness for the first three months and ended up leaving work a month before I was scheduled to. I was quite weak by the end of the pregnancy, but surprisingly, the labor was much easier. They gave me some pitocin to get my contractions stronger hoping my uterus would do most of work before I began pushing. This did work, I was able to push on my own and although I pushed for a while, she came without any other invention. Again, I had an epidural, just in case. Again, my arms were the weakest part of my body afterwards. I was pretty emotional after as well because I always needed help to pick baby up. I tried breastfeeding but the doctors were a little hesitant to say OK because of the Ephedrine I was taking. The baby was very fussy for the first three weeks, which is when I gave up breastfeeding. Whether the baby was fussy because of the medication or if I just didn't try hard enough, it's hard to say. Don't forget I had a six year old who constantly wanted attention and put a bit of stress on feeding as well. The third (and final) pregnancy was the worst. I was sick for four to five months and ended up on short-term disability for the last two to three months of the pregnancy because I was so weak. I was not comfortable driving, I rarely left the house and if I did, I always had to have someone with me. We learned the baby was breech at about 33 weeks and he was so comfy that way, he was not going to move. The options were c-section or trying an ECV (external cephalic version) maneuver at 35 weeks. I decided to try the ECV before having to resort to a c-section. The doctors repositioned baby by lubing up my belly and literally turning him into proper position. A couple of weeks later they induced me because I was so weak and felt I didn't need to be pregnant any longer (of course baby was fine to be delivered at this point). This was the quickest labor (only EIGHT hours!!) and smoothest delivery (or so I thought) but my husband told me later they were considering a c-section because I was becoming so exhausted. But I did it! And, again, my arms caused me the most problems. I always needed help picking baby up for a good couple of weeks following delivery. I was taking Ephedrine throughout this pregnancy and successfully breastfed for 9 months. Now for the most interesting bit of all: I was great, strength-wise, while I breastfed. Once I stopped I went downhill. Ephedrine ceased to work any longer and I could barely do anything. It was to the point that I constantly needed help showering, using the bathroom and getting dressed. I ended up on disability again last year until I felt stable enough to go back to work. I'm now taking new medications, an experimental drug called 3,4 diaminopyridine and mestinon, together they give me the strength to get through the day. I am back at work full-time and the best thing we (the family) have done is hire a live-in caregiver. It's expensive but well worth it. I've been up and down with my CMS since I stopped breastfeeding and have not yet found a happy medium. I never know how I'm going to be until I wake in the morning. But I need to keep going to keep myself mentally stimulated and I refuse to go back on disability. For more information please read the article "High Risk Pregnancy - Myasthenia Gravis" on the University of Utah Health Science Center Web site. Reference address (http://uuhsc.utah.edu/healthinfo/pediatric/hrpregnant/automg.htm)
	©2005 by Cynthia Davidson