Heather’s story emphasizes “You are not alone. ELC makes MS just a thing I take care of on the side and not a disability that defines me.”
In 2015, I told my doctor about some numbness and tingling. I believed that I had a vitamin B12 deficiency because I was following a plant-based diet. My B12 was low, but the nurse practitioner emailed me back and said I should see a neurologist, because she felt it could be MS. MS? I was FUMING! I was healthy, a vegan, I had platinum biometric markers and was in the best shape of my life! Hearing that I might have MS scared me. So, I went to the neurologist for a consult and after an evaluation, he told me I didn’t have MS. Phew!
But, in 2017 I had more left sided numbness. I went to my PCP’s office and saw another provider, who was convinced that I had poor ergonomics at my desk, maybe some kind of pinch or pull in my neck, and probably low B12 again. The doctor recommended I have an MRI. I asked about a more conservative approach since I was a very healthy woman, and the neurologist in 2015 had ruled out MS. Also, a had a high deductible insurance plan, and an MRI would cost me substantially. So instead of the MRI, I went to physical therapy, took B12, and said I would get an MRI if things didn’t change.
In 2019, I took a last-minute 2-week business trip to Singapore and Hong Kong. The stress of organizing an around-the-world business trip as a single mom was rather, well, stressful. But I did it! I flew off to Singapore and Hong Kong and closed a huge deal. But shortly after I returned home, I noticed that my left eye felt wonky, like I had bruised it – I could tell there was inflammation, but I assumed I had bumped my eye since I had just been on a plane for 24 hours. It was the strangest sensation. I had dots in my vision where I just couldn’t see, and the colors were muted where I could see. I could tell something was wrong and since I was due for an eye exam, I went to my ophthalmologist, who was also a friend. The symptoms had improved slightly, and I almost didn’t bother to tell her. Maybe it was just the celebratory champagne I enjoyed on the way home…
I always said that I would rather be lucky than smart… and I am lucky that instead of ignoring what I thought was just a funny story about international air travel, I decided to tell a friend. She looked at my eye and told me she wanted to get one of the other doctors to have a look. They told me what they saw looked like optic neuritis, and the next thing I knew I was being booked for an MRI of my brain and orbits. It showed signs of MS.
Upon receiving the results of the MRI, my PCP who referred me to the MS clinic in her hospital system. I saw the doctor, who confirmed it was MS and then went on to tell me how expensive the treatments were and how we would need to work with my insurance. She showed me a chart and lots of other information…it was all a blur, other than the recommendation that I should start treatment with a self-injected medicine three times a week. She told me that before I could start treatment, I would need to talk to my insurance company, because the medication was so expensive.
The thought of being tied to an injection three times every week made me feel sick. It made me feel defeated and sad. Could I travel? Would I get injection fatigue? Or worse yet, what if I just wouldn’t do it because I am a little bit of a “do it my way” kind of patient (as you might have gathered by now).
The thought that I had to work with insurance because the treatments were so expensive was daunting. Surprisingly, it turned out that calling my insurance company was actually one of the better parts of this experience. I called the advocate line to find out what medications were covered and what the costs would be. She transferred me to a specialty nurse case manager, who was about the most empathetic kind person I had come across thus far (I had not yet made it to ELC). Before we even discussed treatments, she offered me a second opinion service that was available to me through my insurance at no cost. She offered to gather my MRI and records and connect me with a second MS doctor and told me they would set up a telehealth consult. WHY NOT? I mean, MAYBE it wasn’t MS, perhaps it’s the wrong diagnosis, or perhaps I don’t really need to inject myself three times a week forever.
The second opinion gave me more information than any of the doctors had over the past three years. I had a virtual meeting with a doctor from Columbia Presbyterian in NYC. She confirmed my diagnosis and the misdiagnosis from 2017 and 2015. However, she did not suggest the “old school” self-injection treatment. She told me I was otherwise remarkably healthy and encouraged me to seek out a consultation with a different neurologist. She suggested I discuss more current and innovative treatments that could “close the door on disease progression” with the least amount of disruption to my life, to ensure I lived happy and healthy.
There I was, with a confirmed new diagnosis and no MS Clinic or provider I had faith or trust in. My college roommate was diagnosed with MS when she was in her late 20s and had MS for 20 years, so I called her. She lives in western Mass, but she told me about a clinic in Wellesley, where she had had a consultation with a neurologist that she really liked… and he had a dog in the office. I looked up ELC and found Jackson and Doctor Katz.
My daughter, Kayla had been my health care companion through all of this. So, I made an appointment at ELC to see Dr Katz and brought her along. We took all my MRIs and records to his office and after a few minutes, my daughter looked at me and smiled, and I smiled back. We knew this was where I would seek treatment. It was like putting on a dress that was made just for you and looking in the mirror and smiling. I knew I had found the one.
My experience at ELC has been what I think we would all want from health care. The way Dr. Katz explained my disease state, the facts, the options, and the prognosis – I felt like I had a way smarter partner in this battle! We narrowed down my treatment options to Ocrevus or Tysabri, and I opted for Ocrevus, as the twice-a-year schedule really made me feel like I had MS, that MS didn’t have me. I never feel like I am interrupting the front desk staff when I check in. My first infusion nurse, Kathy, was like a friend and since my first infusion, she always remembered me and my kid’s names. Her care made me feel so safe. I joined a newly diagnosed group run by Dr. Katz and found comfort in the MS community. After all, no one understands the quirks of MS like another person with MS. And throughout the COVID pandemic Dr Katz kept me up to date on all the latest data about risk, vaccines, boosters, and other treatments for COVID. WOW!
I am a believer that everything happens for a reason and the universe has a plan. Had I been diagnosed in 2015 or 2017 – my current treatment had not even been FDA approved and was not yet available. And three years into treatment, I have those wonderful three words to scream from the rooftop – NO NEW LESIONS! I also cannot imagine how different life would have been injecting myself three-times-a-week and managing that with a job that requires travel.
Is this what health care has the potential to be? My experience has been what I wish healthcare was for everyone. We may all have different symptoms or presentations, but we can all receive the human centered care that Dr. Katz, and ELC provides. You are not alone. ELC makes MS just a thing I take care of on the side and not a disability that defines me.