Paige’s NMO Story – A Baby & A New Diagnosis

My NMO journey started just a few weeks after having my first baby girl in August 2020.

Being a first time mom, I had no idea what postpartum should look like therefore, some of my symptoms in the moment were overlooked and hard to tell what was actually happening!

About 5 weeks after having my first perfect little baby girl, Blakely, I started to lose vision in my left eye. I remember telling myself that my vision was perhaps becoming fuzzy because I was so exhausted from being up all night with a newborn and not sleeping much.

This was followed by a vomiting attack; I was throwing up uncontrollably. This I also pushed off thinking I may have gotten food poisoning or had somehow gotten sick. Many of my family members thought I might have COVID (of course during the pandemic, everyone thought any sickness was the virus, ha!). That being said, I went to get tested and was negative for COVID.

The hospital pumped me with fluids and anti-nausea medicine and sent me on my way. During this time, I was also experiencing body temperature control issues. I would wake up in the middle of the night shivering in my house where the temperature was 70 degrees, and could not get warm. I was shivering uncontrollably. I thought this was due to postpartum hormonal changes, which it possibly could have been, but it was very extreme and happening often.

After about a month of ignoring the progressive vision loss, which started to become very painful with any sort of eye movement and to the touch, I finally went into an optometrist to get my eyes checked. Believe it or not, he said my eyes looked perfectly healthy and to check in with my OB/GYN if my problems persisted.

I checked in with a midwife who worked for the OB/GYN I saw, and she suggested I see a neurologist to ensure that something else was not going on. I am SO glad she caught this and got me a referral to see someone. As anyone knows how hard scheduling with any specialist is, the neurologist she had referred me to was booked out 7 MONTHS! This was just way too long for me to wait to see someone.

Ironically, my mom used to work for a neuro-ophthalmologist at the University of Utah Moran Eye Center and so she called in a favor. Because of the way my insurance worked, I couldn’t go see her specifically as she was out of network, but she was able to refer and get me into one of her neurologist friends the following week at another hospital nearby in Salt Lake City.

I went in to see this amazing neurologist who ran the full gamut of tests and mentioned a possibility of multiple sclerosis (MS). I very well could have had optic neuritis and being a young woman with these symptoms, I was the “perfect candidate” for this disease. To be sure, she ordered an entire panel of blood tests and MRI scans of my spine and back. To be honest, during this time I was very calm. I’m not sure why, because I think the rest of my family and husband were a little nervous of the idea of me having MS, but I was able to relax and spend some needed time with my little newborn, which I am very grateful for.

My results came back in the first week of December and I received a call from the doctor. MRI scans showed that my optic nerve was inflamed which confirmed the optic neuritis diagnosis. My blood work cane back positive for the AQP-4 (aquaporin-4) antibody. There weren’t any visible lesions on my spine or brain which somewhat ruled out MS.

The doctor told me that with the AQP4 antibody present and other symptoms, she was certain I had a disease called neuromyelitis optica (NMO)

WHAT? Not what I was expecting at all!

I was 23, a first-time mom, and lived a very healthy lifestyle. I was shocked to say the least! Even though she did not specialize in NMO, she did consult with other doctors and determined that I needed to start three days of IV steroids to help regain some  of my lost vision. Even though I had not caught and treated the vision loss early, she still believed that it was worth a shot to do these treatments. By the way, these infusions totally helped to  recover some of my vision!

Because my doctor did not specialize in NMO, she referred me to a nearby MS specialist who also treated NMO patients. I met with this MS doctor in the beginning of December and came home, feeling discouraged, mad and anxious. Part of me wondered if it was because of all the steroids that I had taken! The things she told me were very contradictory to what I had read and heard from other doctors and other patients I had communicated with online. I was very confused and knew she wasn’t the best doctor for me.

The MS doctor prescribed me an injectable medication treatment that the she had never prescribed before. Honestly, I just felt like she didn’t know too much about it and neither did I. But regardless, I trusted her opinion. We completed the paperwork to get this expensive medication approved through insurance and went on our way. After a week of not hearing from the office, the pharmaceutical company, or my insurance, I called the doctors office to see what was going on. Well…. the office staff forgot to submit the prior authorization with the insurance company! I was again beyond frustrated and anxious. We were worried that the delay in receiving treatment could result in a relapse. Weeks past by. It was almost Christmas and the office said that with the holidays, that the medication would probably not get approved until the New Year – UGH!

While getting anxious about the experience, I decided to reach out to several people online from Facebook groups I had joined.  I reached out to doctors at the Mayo Clinic, Massachusetts General Hospital, and Dr. Michael Levy, as well as the founder of an NMO foundation (Sumaira!). My mom reached back out to Dr. Digre (the doctor she used to work for at the University) who recommended seeing Dr. Stacey Clardy at the University of Utah. Dr Levy messaged my back and suggested that I see Dr. Clardy too. And then, I received another message back from Sumaira of The Sumaira Foundation who also recommended Dr. Clardy! She said that she was good friends with her and would reach out to see if I could get into her ASAP! What a miracle!

I’m kind of back tracking here, but there were so many moving pieces happening all at once, but in the beginning of December, my husband’s former boss reached out to him, asking him to come work for him. My husband, Dillon, was not planning on switching jobs, but the opportunity seemed right. One major miracle accompanied by this was that his new insurance covered pretty much anyone and anywhere in the state, specifically the specialists at the university who I couldn’t have seen before. Crazy right?

On New Years Day, when no one is really working, I got a call out of the blue. It was Dr. Clardy herself. WHAT?!?

She called me – someone who wasn’t even her patient yet. Sumaira was amazing to connect me with this doctor and I couldn’t be more grateful! Dr. Clardy was so kind and immediately wanted to help me. After I explained my situation, she immediately called in a steroid for me to suppress my immune system until I could meet with her in clinic the following week. She received my email and sent me all sorts of information on treatment options and highly suggested me not going onto the medication that the other doctor had suggested. I felt so much more at peace finding a doctor who knew the disease and how to treat it.

Dr. Clardy gave me hope that some other doctors had not been able to do.

After meeting and consulting with my new doctor, we determined that Rituximab would be the best treatment for me. Here I am, now receiving Rituximab infusions every 6 months.

I simultaneously changed my diet a bit by cutting out sugar and a lot of refined foods to help reduce flares. I was an avid runner and did some triathlons and races but since being diagnosed, I’ve taken a different approach and have started to do more low stress and high impact workouts. I’ve implemented yoga, pilates and long walks.

I am relatively new to this disease and just beginning my forever journey, but I feel really good and have hope that I can live a great life and keep my NMO under control so I can be the best mom for my baby and future babies!

I am grateful for people like Sumaira and her foundation that have been able to help me understand this disease and grateful for a supportive family and awesome friends who have helped me with my baby and taken care of me when I have been sick and not myself!