The first time I learned I might have MS was when I went to urgent care for my second steroid infusion after losing vision in my right eye and being diagnosed with optic neuritis. The on-call doctor, appearing on a video screen, asked, “You’re hear for an MS relapse?” Umm…, “I haven’t been diagnosed with MS,” I said. I then spent months getting MRI’s, a spinal tap, lots of blood work, a chest X-ray, and meeting, over and over again, with a neurologist and MS specialist. They suspected MS, then they thought it might be something else. They were puzzled. They consulted with other doctors. I was tested for every neurological disease and infection. We were this close to doing more spinal taps to test for cancer, when the MS specialist discovered there’d been a mix-up at the lab. With the corrected results from my first spinal tap, and all the testing that had been done, she was no longer concerned it could be something else. But, she still wasn’t sure it was MS.
There is no test to diagnosis MS. Instead, there are a series of tests to look for signs of MS, and lots of tests to rule out other explanations. If you have enough signs of MS, and every other explanation has been ruled out, you are diagnosed with MS.
MRIs are used to look for brain and spinal lesions, which indicate MS, but can have other causes. I had a handful of small brain lesions, no spinal lesions. The spinal tap is looking for proteins in your spinal fluid that are common with MS, called Oligoclonal bands. I had five. Blood tests are primarily to rule out other causes. I was tested for everything from Lupus to AIDS, and several things I can’t pronounce. Tests were sent to the Mayo Clinic. Everything was negative. My blood did show vitamin B and D deficiencies, which are associated with MS, but can also cause MS-like symptoms. MS symptoms are also considered. In the beginning, optic neuritis, which is highly associated with MS and is a common first symptom, was the only symptom I had. My doctor said based on my tests and symptoms there was not enough to diagnosis me with MS, but there was a 70% chance I would develop MS. So, we decided to start treatment.
Over the next months, I injected myself with a medication that is supposed to slow the progress of MS, but takes six months to work. I took vitamins, changed my diet, and managed my stress. I read a lot about MS, joined online groups, listened to podcasts. And, I paid meticulous attention to every sensation in my body. I had symptoms, and they became more obvious and more frequent. Stiff, sore muscles in my legs and back, blurry vision with heat or stress, fatigue, and more.
I emailed my doctor about my new symptoms and she scheduled a phone consult. We talked about my symptoms and she said she was a little concerned, but not too concerned. Which made me concerned. She said my symptoms indicate possible spinal lesions and more progressive MS than she originally thought. It was time for my next brain MRI, and she added another spinal MRI also. She said if there were spinal lesions, we would discuss switching to a more aggressive treatment. Which, of course, made me panic, a little.
I did the brain MRI. The online results were available the next day. So, of course, I read it. There were lots of big, medical words that I didn’t understand, but I deduced that there were two or three new lesions. I really wanted an official diagnosis. The unknowing, grey area of likely MS, but not officially MS, drove me crazy. I was glad there were new lesions. This meant a diagnosis. And, that I wasn’t crazy. I wasn’t imagining symptoms. But, couldn’t it have just been one new lesion? How bad was two or three??
The next day my doctor sent an email saying that there were two new lesions, and this would be my baseline for Glatopa. I felt some relief. It sounded like she was not concerned. So, two new lesions must not be that bad. I’d been on Glatopa six months, and it takes six months to work. So, we’d stay the course and hope that next time there wouldn’t be any new lesions. Unless there were any spinal lesions.
I was more nervous for the spinal MRI. Spinal lesions could mean more risk of disability and needed more aggressive treatment. Plus, the MRI was much longer, which is no fun. Results were online again the next day. No new lesions. Woo hoo!
When I met with my doctor she discussed the MRIs, asked about my symptoms, and prescribed medication for fatigue, in addition the medication she’d prescribed for muscle spasms. She talked about our next steps, follow up appointments, and future MRIs. Then, at the end of the call, she said, okay, so we’ll talk again in four weeks. “Do you have any other questions?” Ummm…yes! “So, does that mean it’s officially MS?” I mean, seriously, how did she skip that part? “I would say so,” she replied. And, that was my anticlimactic official diagnosis, nine months later.
When I got off the phone, I smile crept over my face. I was happy. Weirdly, happy.
My official diagnosis was June 9, 2021. A couple weeks later, I had to deal with a record-breaking heat wave.