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Getting an Unexpected Call from Your Neurologist

By Matt Cavallo

For me, no news is good news when it comes to my relationship with multiple sclerosis. I am in a rhythm with my MS routine. Every six months, I get bloodwork, have an MRI, visit with my neurologist, and get my MS medication reauthorized. During those visits I like to hear that there is no new disease activity on the MRI and that my bloodwork is normal, so I can continue on my therapy. 

This last visit, I did things a bit out of order. I saw my neurologist first because I forgot to have the orders called in ahead of time for my labs and MRI. As a result, we weren’t able to review my results during my appointment. I thought that would be okay, because I still needed to get those tests done before my neurologist would approve my medicine. I just wasn’t going to be able to review them with him.

After the visit, I scheduled my MRI and my lab work. I always try to use the lab website and schedule ahead to limit my wait time. If you have to walk in, you will be waiting behind all of the other scheduled appointments. I don’t want to spend any more time than I have to in a waiting room, so I always schedule ahead – even if that means I can’t get an appointment for a couple of days. It is worth it.

After I had my appointments for both my MRI and my lab work, the infusion center then called to schedule me for my MS therapy. I went in for my infusion and everything went off without a hitch, except for a slight itch caused by the medication, but that is a story for another day. When my infusion was finished, I figured my six-month routine was complete. Then, I got a surprise call from my neurologist.

When I saw my caller ID, I knew it was from my neurologist office. I initially thought it was a medical assistant calling to let me know that my MRIs were stable or something similar, so imagine my surprise when it was my neurologist on the other end of the phone. I knew right away that something was wrong because my doctor only calls if there is an issue. 

Once we exchanged pleasantries, he got right down to it. My blood tests were showing a deficiency and he wanted to know if I had any recent infections. I asked a clarifying question of what kind of infection and luckily, I did not have any of infection he mentioned. He went on to say that if I do develop an infection, we may have to change our MS treatment plan. He also said that we will monitor it closely and try to stay the course because I have been doing good on my current treatment.

Now, I am learning that even though my MS is stable with this treatment, there may be other risks to consider. For now, I am going to stay the course and continue my six-month routine. Next time, I am going to call the neurologist’s office and get my orders sent out well in advance of my appointment. I want my neurologist to have all the information he needs so we can discuss these issues during our appointment and not on a surprise phone call after the infusion. This way I am proactively managing risk and providing my neurologist the all the data needed so that we can make informed decisions about my health and MS treatment options.