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. 2023 Dec 22;14(1):e200222. doi: 10.1212/CPJ.0000000000200222

Table 2.

Illustrative Quotes

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“How did MS affect your decision not to become pregnant?”
Fear of MS worsening with pregnancy (both with postpartum relapse and long-term disease progression) “Concerned with further impact on disease progression”
“I'm scared that… the carrying/labor process will be detrimental to my health”
“I had 2 friends with MS who died from worsening symptoms after giving birth”
Caring for children while living with MS “MS causes my vision loss and decreased energy levels. I did not want to be responsible for another human being when I felt like caring for myself was already a challenge.”
“Concern about not having enough energy to give a child (newborn-teenager) all they would need -for me, with MS came a great sense of fear of the uncertainty of my future (and this is still a concern), more than 20 y later as I see how I have steadily declined in all of my abilities.”
Concern for the child's future health, genetic risk of MS “I'm scared that my offspring may get the gene”
“Refuse to pass it on being 3 out of 4 generations”
Pregnancy concerns related to DMT “I cannot be pregnant on the medication I chose”
“Husband had a vasectomy because the medication I am taking for MS is not compatible with pregnancy.”
Discouragement from medical professionals “Doctors thought I needed medical treatment more”
“Without saying it outright, my doctor discouraged pregnancy:("
“What did you wish you knew before pregnancy with MS?”
Discouragement from medical professionals surrounding childbearing and breastfeeding “I became pregnant at 42. I was diagnosed in 1985 and was told to stop the birth control pill and to never have a child... when I became pregnant I was taking Betaseron and it was not a planned pregnancy. Stopped Betaseron as soon as I found out I was pregnant. I had a beautiful pregnancy and gave birth to a preemie 4.8 lbs... I wish I would have seen my other neurologists who NEVER said not to have children.”
“I wish all MS patients had been more encouraged to have kids if desired.”
“I was devastated that I could not breastfeed as long as I wanted to. I extended to 6 mo but then stopped out of fear. In hindsight I wish I had breastfed as long as I wanted”
Misconceptions about relapse (during pregnancy and postpartum) “[I wish I had known] relapse wasn't on the horizon for me personally”
“I do wish that I had known that relapses were common post pregnancy”
MS effect on pregnancy and vice versa “I wish my neurologist had been more comfortable with MS in general (at the time was a general neuro I saw) or knew more about MS/pregnancy”
“[I wish I had known] that pregnancy is protective of MS in some ways”
Desiring more information about DMTs and pregnancy “I wish there were more studies on medications in pregnancy and studies like this for reassurance/advice on what others have been through!"
“I was frightened the pregnancy would complicate my MS and that I may have injured my child by being on avonex”