My 15 Year Journey To Diagnosis In NYC
At the age of 15, not only did I develop asthma, but also started getting what I called "chronic back pain" for the next 15 years. This pain remained treated (sort of) for the years following, with countless chiropractorphysical therapy appointments, and taking Ibuprofen, some things seemed to work momentarily, but it would always come back.
A chiropractor showed me my spine
In NYC, a physio doctor at a chiropractor office I visited showed me my x-ray and how the space between each part of my spinal cord was smaller than it should be for someone my age, which at that time was around 24. She called it very early arthritis and I didn't question, continued treatment with massage, PT and chiro visits, which seemed to manage things okay, with a diagnosis of carpal tunnel and tendonitis in the wrists, managing that the same way.
Then leg pain came
In 2017 (age 28 or so), I started experiencing leg pain, especially at night. When I told my GP this at a physical, she was skeptical but sent me to a physical therapist at Mount Sinai for the legs. As I walked in there with my fashionable boots, my therapist was at first skeptical too, but as she worked with me more and more, she could see that what she was doing wasn't improving anything, and told me my legs were swollen and that I shouldn't see a deep pant line in my legs (I thought this was normal, I was used to it!). She gently examined my legs and said "you know, I think you may have something autoimmune here. I recommend you get a blood test."
I got blood tests
I still wish to thank her, but that PT facility has since closed down and I don't know where to find her. I went to my (now different) GP for a blood test, which came back with some positive ANA, and low vitamin B and D among some other things. She sent me to a rheumatologist, who diagnosed me through x-ray and confirmed through MRI. When he wrote the name out of AS on a slip of paper for me, I had never heard of it. I said, I have two questions. One, am I going to die? And two, will I be in a wheelchair?
I started Humira
My doctor assured me that neither would happen. I started Humira after a long insurance battle, and after 3.5 months, combined with cutting out gluten, I started to see a difference in my back and leg pain. Yoga, Humira, and medical marijuana, along with occasional chiropractic care and a good gluten-free diet, have been my treatment, which really has been great for me.
My treatment is working
Up until the pandemic, I was still working 60-90 hour work weeks and walking 3-9 miles a day, some days faster than others. AS has forced me to do some self-care like massages and yoga classes, even when I barely have time, and I've met some great people in the support group I attend here in NYC. I also became much more health-conscious, which helped keep me healthy as well, especially in a big city and in my travels. In August 2020 it will be 2 years since diagnosis. I hope this story might give some hope to people just diagnosed. Not every day is great and certainly not pain-free, but I've accepted my diagnosis and am grateful for the life I am able to lead through my treatment plan with my doctors.
Do you use the word disability to describe your AS?