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The uncharted territory of pregnancy and Lambert-Eaton
Lori Dunham’s most recent column “The uncharted territory of pregnancy and Lambert-Eaton” Couldn’t have been written at a better time.
Many of you may know, but in July I had a miscarriage. Today would have been our baby’s due date.
I can speak to some of the points and questions Lori had about LEMS and pregnancy, even though I only made it to 8 weeks before miscarrying.
I was curious if anyone else has experience with pregnancy and LEMS.I know of many LEMS patients who have been pregnant and given birth. As a patient with myasthenia, I was automatically considered high risk and was sent to a high-risk OB practice. I had to see both the high-risk OB and my regular OB and was told I would be monitored my entire pregnancy by both.
While pregnant, I did take Firdapse although there are no studies on patients who are taking firdapse while pregnant. The other patients I knew who had LEMS and had successful pregnancies did not attempt to take firdapse.
My pregnancy was not planned. In fact. I was told by a fertility specialist that I would likely not be able to get pregnant due to my multiple autoimmune diseases causing “Diminshed ovarian reserve.” In other words, my body was/is destroying my eggs. However, it happened, and I found out six weeks into the pregnancy. I was overjoyed as my fiance and I were in the process of trying to freeze eggs and preserve fertility and it came as a surprise.
Unfortunately, we were not able to find out the cause of my miscarriage. It is still a pain I carry with me on a day-to-day basis, especially this month knowing that he or she would be arriving any day now if things went a different way.
As I said earlier, there are no studies of pregnancy with Firdapse and not many known pregnancies in patients with LEMS. It is unfortunate that we don’t have much data to go on. I had enrolled in both the Firdapse pregnancy registry and agreed to be in a study to learn more about pregnancy in LEMS.
Going forward, I have made a personal decision that I would (and have since) discontinue Firdapse during pregnancy as the risk of another pregnancy loss was just something I couldn’t bear going through again, especially if it was something that could have potentially been prevented.
Ultimately, It is a personal decision and was very hard to make.
Does anyone have any personal experience with pregnancy and LEMS or Firdapse during pregnancy? I would love to hear about other’s experiences.
Has anyone else here had problems getting pregnant or sought a fertility specialist?
On a side note, I have my wedding on Saturday as my fiancé and I wanted to have something to celebrate in March and may be a little less responsive due to taking a short honeymoon next week! Enjoy the rest of your week/weekend and I look forward to catching up with you all!
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4 Replies
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Hi Ms Ashley! Congratulations on your wonderful marriage! May God bless you and your sacred commitment for many more years to come. I suspect I had LEMS since I was pretty young. I had absent tendon reflexes at my 12 yr old physical but never too much more until the last 10 yrs. Anyway, I had 4 pregnancies and 1 miscarriage of unknown cause. I went in to preterm labor with all of my pregnancies. I was put on bedrest for most of my pregnancy in all 4 cases. I would randomly start to contract and had to receive IV magnesium to stop labor. Then the magnesium lowered by blood pressure so very low. On my 3rd pregnancy I experienced horrific urinary retention, requiring a Foley catheter. Unexplained cause of course but now I know it was LEMS. Now, I experience retention at least a few days a week. Also, I experienced some sort of bowel obstruction during my 4th pregnancy causing absent bowel sounds, constipation, and requiring a nasogastric tube. This resolved randomly. No explanation of cause, now we know it was LEMS. Constipation and delayed gastric emptying is also one of my LEMS expressions. The good new is, I have 4 wonderfully healthy children. Only 1 born slightly preterm but got to home in time with me. I am excited for you and know that by the Grace of God it is going to happen for you, all in His time. Praying for you and all of us LEMS warriors, always!
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Hi @Desiree Taliancich
Thank you so much for your thoughtful reply! It meant so much to me!
Overall, I’m really happy and relieved that you had four healthy babies! I really appreciate you sharing the details of your experience, I feel a little more prepared now! I think I also have some urinary retention normally as well as constipation. I thought I had delayed emptying, but my test came back normal when I was first diagnosed in 2015. Not sure if anything has changed since then. I will share your experiences with my doctors in hopes to prepare them as well!
One other recommendation I received from my cardiologist was that they recommended extra hydration and said that usually patients with POTS do well with IV fluids about once a week! They also recommended that I have an echo in my second trimester whenever I get there!
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Hi Ashley. I am so very sorry to hear of your miscarriage. Having been through multiple miscarriages, I understand some of what you are going through. Of course, I know LEMS adds another dimension to the complexity of your pregnancies. Thank you for your willingness to share your pregnancy journey with us as we all seek more information regarding pregnancy and LEMS. Congratulations on your marriage!!!
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Hi @Lori Dunham
Thank you so much for your thoughts and comment! I will continue to share my experiences and hoping to have a little one on the way in the future! I really love being able to “pave the way” for others to have some knowledge!
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