LEMS and pregnancy

[Dawn DeBois]

Hi @ashleygregory757,

I can understand why you would be curious about thus topic!  I fall in the undiagnosed but having had symptoms for a while.

Here are things I think of looking back:

-I carried extremely large. My babies were big, yes, but being close to 6 feet tall, my stomach was enormous. I scared people being put and about the last few weeks. They would ask if I was expecting twins…lol. We have a mutual friend with LEMSs in her last few weeks abs our stomachs are so similar. It’s as if my abdominals did absolutely nothing to contain my expanding uterus.

-Due to my back complication and size of my babies, I had to have c sections and an epidural was not an option. The first general they put me under, I stopped breathing. You probably know more about which med they shouldn’t have used. From that point on with subsequent surgeries when asked if I ever had a problem with anesthesia, I’ve told them not to use what was used for my first C and never had that issue again.

-I would not stop bleeding after my first C. My uterus would not contract with pitocin alone. Methogyn had to be added. My OB told me the next day he thought he was going to see me in the OR again the night before. It was very close. Each successive pregnancy he gave me both contraction meds after my c sections to contract my uterus.

Heathy babies?  Yes, absolutely. However, the pregnancies were definitely tough on my body. I’ve lots of battle scars and stretch marks.

[Ashley]

Hi @dawn-debois,

Thanks for your input!

Nowadays most C-sections get spinal anesthesia instead of an epidural if it is planned. This is a different type of blockade than what a C-section does.

I believe the medication you are referring to is a paralytic called succinylcholine. It actually causes any patient to stop breathing because it paralyzes your muscles. This is the intended effect when you need muscle relaxation during surgery and requires the use of a ventilator. It is also used before intubation to open up your vocal cords so we can put the “breathing tube” between them without causing damage to them.

There are several different types of paralytics we use in surgery, but succinylcholine is a depolarizing paralytic which is where the problem lies for LEMS patients. To sum it up, depolarizing paralytics work at your neuromuscular junction. They cause the cells to release all of the acetylcholine in storage which causes paralysis. As you know, LEMS patients already have a shortage of acetylcholine which causes muscle weakness. Due to already having a short supply of acetylcholine, its takes a patient with myasthenia much longer to build this supply back up enough to allow your muscles to become stronger again. This results in needing a ventilator for a longer period of time and a longer “wake up” period.

In the past few years, a drug that reverses paralysis has been developed called Sugammadex which is very helpful for non-depolaring paralytics, however this does not reverse the effects of depolarizing paralytics like succinylcholine. If surgery is necessary for patients with myasthenia (in general), nondepolarizing paralytics should be used instead if absolutely necessary. Most anesthesia providers are very aware of this, but it doesn’t hurt to confirm with them.

Yes, it is actually pretty common that patients require methergine to contract the uterus, which is what I believe you mean. We also sometimes use this in surgery for gynecological cases.

Glad to hear that your babies were healthy anyway!

[Dawn DeBois]

@ashleygregory757,

 

I knew you would understand the anesthesia issue.  I wish I had been able to have an epidural but- at least I had healthy babies as the end result.

As for the methergine, my OB seemed to say that having to do both methergine and pitocin at the same time to contract my uterus was not the norm that he experienced post c section. However, I had new Mom brain. Looking back, it was something that made me go “hmmmmm.”

I have read about moms with Myasthenia Gravis’ babies sometimes have transitional myasthenia when they are born- it would be interesting to hear from anyone whose baby may have experienced that. Thankfully it’s transitional.