An Update on My First Neurology Appointment After Diagnosis

This week I had my first appointment with my neurologist since diagnosis. It was a telemedicine appointment, courtesy of the Omicron wave of the COVID-19 pandemic. We had a few things to discuss. Since my last appointment I’ve had an MRI, I’ve developed a few new symptoms, I’ve started my Disease Modifying Therapy (DMT), Kesimpta, and I’ve just recently managed to receive a 4th dose of COVID-19 vaccine.

My MRI in October identified a new lesion (one that wasn’t present on my MRI in April). It also showed that the lesion causing my optic neuritis had shrunk in size since April, which is great news. My vision is still foggy or cloudy in my left eye, so I am hoping that this lesion continues to shrink. My other lesions all appeared stable. My neurologist advised that it was most likely the case that the new lesion developed prior to starting my DMT, as I had only been on Kesimpta for about a month at the time of the MRI.  Additionally, he noted that we cannot really see how well a new DMT is working until I’ve been taking it for 6-12 months. I discussed my frustration over my MRI with him. He had indicated that I would have a brain, cervical, and dorsal spine MRI with contrast. When I arrived for my MRI, I was advised that they were conducting a brain-only MRI without contrast. This is concerning because I don’t have a proper baseline MRI from which to evaluate the efficacy of my chosen DMT. My neurologist advised that the radiologists have been cutting back on MRIs for MS patients to the “minimum monitoring standard” in order to try to catch up the backlog in the MRI department caused by the COVID-19 pandemic. He expressed his own frustration with the situation. I advised my neurologist that I never cancelled the MRI appointment scheduled by my neuro-ophthalmologist as a placeholder at the time that he referred me to the MS Clinic, since I felt that I didn’t have a proper baseline MRI otherwise. It is scheduled in March and is scheduled as a brain and cervical spine MRI with contrast. I have spoken with the MRI department, and I know that they haven’t changed the scope of the MRI ordered. He was pleased to hear this and said that I should keep the appointment. Apparently, my neuro-ophthalmologist has given me a backdoor route into getting proper medical care during the pandemic. The ridiculous thing is that, had the MRI department done the MRI that my neurologist had requested in October, I wouldn’t need an MRI in March at all. So instead of one MRI, I’m having two and therefore taking up more resources. This approach isn’t going to resolve their backlog. While I am grateful to have public healthcare, sometimes I have to shake my head at how they manage resources.

I’ve had some troubling new symptoms of late. On January 9th, most of the left side of my body went numb and tingly. I lost strength in my left arm and hand. For example, I couldn’t get the lid onto a sippy cup for my son, and I couldn’t lift a casserole in and out of the oven for dinner. Thankfully, my husband was on hand to help out. This lasted for about 3 days and then gradually started improving. I’m still getting numbness and tingling in my left hand, arm, and foot, but it is no longer affecting the left side of my face and my left leg. Additionally, my strength has come back, and I have been able to resume weightlifting and can carry on my day-to-day activities normally again. I discussed this with my neurologist, and he advised that this would be logged as a “possible relapse” in my chart. He said that with numbness and tingling, it can be hard to differentiate what is a real relapse from what is transient and triggered by environmental factors. I strongly suspect that the cold weather is triggering symptoms for me. Most MS patients have greater difficulty with hot weather, but some report difficulty with cold weather. I’ve noticed that when I run out to my garage in just socks, it generally leads to numbness in my feet for hours afterwards. We have a fridge out in the garage, so it is not unusual for me to run out there to grab a sparkling water, but I am finding that these trips now require shoes. Given that we were going out for family hikes in -20-degree Celsius weather before my January 9th symptoms developed, it is possible that the cold weather triggered them and that they aren’t a true attack. The reality is that I will likely never know whether it was a real attack or not.

While I have an MRI with a new lesion showing, and I have had recent new symptoms, my neurologist is still happy with the DMT that I am taking. He advised that we won’t get a real sense for whether Kesimpta is working for me until I have been taking it for 6-12 months. Meanwhile, we will be meeting again around April to discuss the results of my next MRI. I’m happy to hear this, as, so far, Kesimpta has been well-tolerated. It kicked my butt during the loading doses, but now that I’m taking monthly doses it is very manageable.

Finally, I discussed my recent COVID-19 vaccine with my neurologist. Ontario started offering 4th doses to those who are immunocompromised on January 14th. As the recipient of a CD-20 monoclonal antibody therapy, I qualify. They required that 4th doses be taken at least 3 months after 3rd doses. As my 3rd dose was in August, this made me immediately eligible. I called in and managed to get an appointment the same day. They recommend timing vaccines carefully around Kesimpta to maximize their impact. I knew that I was far enough from my last dose of Kesimpta to get the vaccine, but as it was just 8 days before my next dose of Kesimpta was due, I figured that I would likely be told to delay my next dose in order to let the vaccine take effect. Sure enough, my neurologist has advised me to delay my next dose of Kesimpta by 6 days in order to allow 2 weeks for the vaccine to take effect. With my husband about to head back to in-person teaching and my son’s daycare friends having siblings already back to in-person schooling, I am relieved to have re-upped my protection. I also built a Comparetto Cube (a type of Corsi-Rosenthal Box) for my home to provide some additional protection against COVID-19. Hopefully these measures, in combination with mask wearing and hand washing can keep me COVID-free through the remainder of this wave. My fingers and toes are crossed that re-opening schools doesn’t reignite this wave, which is showing some promising signs of having crested here in Ontario. Meanwhile, for those who can, get vaccinated, get boosted, wear your masks, wash your hands, support your local businesses, and let’s work together to see the end of this pandemic!

My DIY HEPA filter, called a Comparetto Cube (comprised of 4 MERV15 filters, cardboard, and a cheap box fan).