Dr. please know that of which you speak

NOTE: This post contains a lot of details that are spread out among other posts, but they are condensed here to make a point.

When I was first diagnosed with MS about 12 years ago, I was only 25 years old.  Besides being incredibly shocked and scared, one of my first thoughts was that this might mean that I might no longer be able to have children.  I was being seen by a highly respected neurologist at Johns Hopkins.  When I asked him about having children he told me that there was no reason that it should ever be a problem for me.  Not only was there no real proven genetic connection, as children with a parent having MS only seemed to have less than a 1% greater chance of developing MS than the general population, but the mother seemed to be safe from exacerbations during pregnancy, though there was a higher chance of an exacerbation during the first 6 months after delivery.  The only thing he cautioned me about was to stop taking any DMD (disease modifying drugs) that I might be on prior to trying to get pregnant.  As you can imagine, I was quite relieved to hear that information.

When I was dating Ed and I told him that I had Multiple Sclerosis, I felt very secure in telling him that it would have no effect on our moral or physical desire to have children.   We were married a little under a year later.  I had stopped taking my Avonex a few weeks prior to the wedding on the advice of my neurologist, just in case.  Low and behold I was pregnant with G. less than two weeks after we got married.  I believe I had as typical a pregnancy as one can have, if there actually is a typical pregnancy.  I continued to work at my job as a paramedic on a busy medic unit until I was 33 wks pregnant, and then I went into an office.  I emailed my neurologist towards the end of the pregnancy and he had no concerns.  he just said that he did not advise going back on Avonex while breastfeeding and neither did the drug company.

Approximately eight months later, while still breastfeeding G., I became pregnant with E.  As soon as my body realized that I was pregnant I started to go into a severe exacerbation.  I went from working on the medic unit to almost paralyzed in 8 weeks.  Not only was I having an exacerbation while pregnant, but it was the worst one I had ever had as all my previous attacks were strictly sensory in nature.  When I called my neurologist, I was told that they would not treat me because I was pregnant.  At around 8 weeks pregnant I was blessed to get in to see a Maternal Fetal Medicine Dr., basically just a high risk pregnancy OB, who said that I could be treated and called my neurologist to tell him to start treating me.  I received one round of high dose Solu-Medrol at home which helped my legs slightly but made my arms get worse.  When I finally started losing use of my left arm, I went into the ER.  They admitted me to run extra tests because pregnant women just didn’t have MS attacks.  After nothing else could be found they finally had to admit that it must be the MS.  I required multiple additional steroid treatments during the course of my pregnancy and eventually delivered a healthy baby girl by c-section.

There are so many things wrong with the above scenario that I hardly know where to begin.  First, no doctor should ever guarantee an exacerbation-free pregnancy instead of just a high possibility of one.  When that guarantee did not hold true, refusing to find out how to treat your patient is unacceptable.  My neurologist worked at a large multi-specialty medical facility that also included high risk pregnancy, but he could not pick up a phone and place a consult.  Even after all other tests proved negative, he was still basically unwilling to admit that what was happening was actually happening, and then he defended his decision to turn his back to a patient instead of doing a little research.

At this point you are probably asking yourself why I am rehashing all of this, especially if you have been following my blog from the beginning.  Well yesterday I went to a lunch, sponsored by a drug company that had a neurologist come and speak about the basics of MS and possible therapies.  During his talk somehow the topic of pregnancy came up.  The neurologist stood up in front of that room full of people and told everyone that all women were protected from exacerbations while pregnant. We all know that nothing dealing with MS is a certainty, and the promise of an attack-free pregnancy is just as uncertain as anything else.  If there happens to be a neurologist out there reading this, please think about it the next time a woman asks you about getting pregnant, and if there is a woman reading this thinking about getting pregnant, please know that no matter how many neurologists tell you there is no concern and how many books you read that back them up, that it is just a high probability and not a fact.


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