A friend with LEMS shares her pregnancy journey

For women with Lambert-Eaton myasthenic syndrome (LEMS), it’s concerning that there are little to no data on pregnancy and LEMS. That’s why I’m thrilled to introduce Kristin Williams, a 31-year-old registered nurse from New York who has firsthand experience with both.

Kristin and I met through the Lambert-Eaton LEMS Family Association, where she’s in charge of social media. As a mother to a teenage daughter with LEMS, I found hope in Kristin’s story and hope it will encourage other young women with the condition.

Following are excerpts from our conversation via email.

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LD: When and how were you diagnosed with LEMS?

KW: I was diagnosed with LEMS in the fall of 2021, at 28 years old.

I was planning my October 2021 wedding and I started to experience increased fatigue. I attributed this to excitement and stress of wedding planning. Once married, we went on our honeymoon. However, I found that the fatigue had progressed to muscle weakness. One day, I felt my legs give out from under me, and I fell in the street. Luckily, I had not suffered any serious injuries. I knew then my symptoms were more than just stress/fatigue.

Once home, I made an appointment with my primary care doctor. He referred me to a neurologist. She was incredibly accommodating and was able to see me the next day. Within approximately four weeks, I had an EMG [electromyography], bloodwork, and I was diagnosed with LEMS.

How did the diagnosis affect your life?

After my honeymoon, I returned to work [as a nurse] in the emergency department. However, I found it increasingly difficult to push stretchers, move equipment, and walk long distances in the hospital.

When I was first diagnosed, I completed approximately six months of IVIG [intravenous immunoglobulin] treatments, 80 mg Firdapse (amifampridine), and 120 mg pyridostigmine [sold under the brand name Mestinon]. I changed my job from ER nurse to nurse case manager. Now, I am able to work at a desk and have a modified schedule. Throughout my pregnancy I maintained that same work schedule.

Can you share about your pregnancy and delivery?

I worked closely with a high-risk maternal fetal medicine (MFM) specialist, as well as my neurologist. Prior to becoming pregnant, I had several consultations with MFM and neurology to assess my symptoms and create a treatment plan. My medical team decided to keep me on Firdapse/Mestinon during my pregnancy and monitor my symptoms as well as baby’s development closely.

My symptoms greatly improved during pregnancy. I had less weakness, required less medication, and was able to walk greater distances with less fatigue. While I had some typical pregnancy ailments, my LEMS symptoms were mild compared to pre-pregnancy. Overall, I felt amazing! I even went to Disney World and walked 15,000-plus steps without the use of a wheelchair. It felt incredible and gave me a glimpse of my “old” life.

While I was feeling well, I had the ever-present worry of how this disease and medications would impact my developing baby. I received multiple ultrasounds, heart rate checks, fetal echocardiograms, growth scans, and anatomy scans — all of which appeared normal throughout pregnancy.

Around week 29/30 of pregnancy I was diagnosed with hypertension, which progressed to preeclampsia at 34 weeks gestation. The medical team was unable to give me the standard medications for preeclampsia (a form of magnesium infusion) due to LEMS. We decided to induce labor, and I delivered my baby via cesarean section [last summer]. It’s unclear what “caused” the preeclampsia, but my LEMS symptoms were well managed during my pregnancy.

How did your OB-GYN manage your case in light of LEMS?

While many of the doctors were familiar with LEMS on paper, there was very little information on how to manage LEMS in pregnancy.

Many of the providers used literature on MG [myasthenia gravis, another autoimmune disorder] in pregnancy to guide our decision making. My baby spent three weeks in NICU [neonatal intensive care unit] growing and developing after being born early. Neurology staff evaluated him and did not find any neurological or LEMS-related concerns.

Baby and I are now home and doing well. He is being followed by our family’s general pediatrician and has a follow-up with a pediatric neurologist.

My LEMS symptoms are still rather subdued. I am remaining on lower doses of medications, and I am following up with neurology monthly to monitor for a reemergence of symptoms. But for now, I am grateful for every “healthy” day I have with my baby.

I reflect back to when I was diagnosed, not knowing if I would ever be healthy enough to carry a child. My mind can easily find its way back to the feelings of uncertainty, pain, and worry that I felt.

I hope my story can provide hope (but not medical advice!) to other LEMS patients.

Thank you, Kristin, for sharing your amazing story.

Note: Lambert-Eaton News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lambert-Eaton News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Lambert-Eaton myasthenic syndrome.