MS Patient, Ph.D.: A Pregnant Pause
My own experience suggests that awareness of MS’s impact on pregnancy is either low or outdated within the obstetrics community
One of the first people I told that I was pregnant, aside from my parents and in-laws, was my doctor. Of course you expect to tell your obstetrician (OB), or at least ask them to confirm the home pregnancy test. But most women outside of the MS community, I presume, would be surprised to be discussing reproductive health with a neurologist.
In fact, we had already had a conversation months earlier, even before I talked to my OB about it, about planning the discontinuation of my disease-modifying therapy (DMT) before trying to conceive. We talked in-depth about keeping track of my health sans DMT, timing the next visit and whether an MRI would be taken before then. Luckily, I got pregnant right away, so my worries about having a new relapse while off DMT and before the mysterious protective effects of pregnancy kicked in didn't come to fruition.
Early on after my diagnosis, I had been comforted by the fact that I could expect a standard pregnancy. My OBs didn't seem to be aware of this fact. And maybe they aren’t, since the major shift in recommendation about MS women becoming pregnant only happened 16 years ago, when the Pregnancy and Multiple Sclerosis study results were first published (Confavreux et al., 1998). Rather, they seemed especially intimidated by me as a patient, even though I had only experienced one sensory relapse and was otherwise pretty healthy. (Read: I'm sure there are other patients to worry more about.)
My OB was so anxious about me that he pushed me to have a consult with the anesthesiologist ahead of time, possibly due to outdated research (Bader et al., 1988) that had correlated high concentrations of anesthetic with increased relapse rate. This was not necessary since epidurals don’t affect the rate of relapse (Confavreux et al., 1998) or cause any specific issues in patients with MS. Reassured that there were negligible risks versus the general population, I ended up just talking to them on the phone about my own concerns about an epidural, which were unrelated to the fact that I have MS.
I also saw a fetal medicine specialist at the request of my concerned OB, which basically flagged my pregnancy as “high-risk.” This specialist did more ultrasounds than normal but also wasn't terribly concerned with my MS, although she warned me that there was a higher chance of me having a cesarean section, which is somewhat controversial (Lu et al., 2013) but didn't happen to me anyway. In the end, I had a lot more office visits and extra tests than a standard pregnancy would require—which added to the cost of healthcare and the amount of time that I had to take to go to the extra visits. There's more I can say about my pregnancy and breastfeeding experiences, but I'll leave that for another post.
I will say, I'm pretty happy with how supportive my neurologists were about me having a baby—and, of course, the research supports this stance (Vikusic and Confavreux, 2006) They kept me relaxed during the pregnancy, especially when I repeatedly asked what to do if I had a relapse while pregnant. (Short answer: We will cross that bridge when we come to it; it will depend a lot on all the variables.)
Instead of offering the same support that my neurologists did, my OB seemed pretty uneasy about seeing a pregnant lady with MS—not something that was comforting as an already paranoid first-time mother. This is unfortunate since as infrequent as MS is in the total population, it emerges in women of childbearing age the most often. I was not impressed by the lack of knowledge or, at best, outdated knowledge from my OB about pregnancy with MS. The easiest (quickest?) solution for this issue might be for neurologists to take a more proactive and holistic approach with their patient by contacting a patient’s OB to calm their fears and address their concerns.