My Journey to an MS Diagnosis

I recently posted that I’ve been diagnosed with MS. I’ve decided to post about my journey. It’s certainly not a template for others. Each person’s journey to diagnosis is unique. I’ll probably update this as my journey continues. This is the thorough version. I’ll also write up a short version. 🙂

On December 17, 2018, I had a massage which focused only on my shoulder and neck. She didn’t even touch my legs or arms. It had been months since my last massage and I let her go a little too deep. I had quite a bit of pain from it and couldn’t sleep. The next day, I celebrated my 14th wedding anniversary. After our dinner, we walked around the mall but my feet were hurting from new shoes. I felt some burning pain in my leg but thought it was just from the shoes and walking. I couldn’t sleep that night either. The pain got worse at night.

The next day, was a Christmas party for my church bible study group. I was in pain all day and couldn’t sit for the whole party. I was definitely smiling through the pain. The next day, I had another massage and we worked out the residual pain from the last one. I let her treat my legs that day but I didn’t get lasting relief. On December 20, we traveled to visit my husband’s uncle who was in failing health. The drive was excruciating, even more on the way back. On that Friday, I saw my chiropractor, who agreed with me that it must be sciatica.

I still hadn’t slept through the night and Christmas was approaching. I was sleeping only from 4 to 6 am. I spent my days and nights doing stretches and rubbing myself down with essential oils. On Sunday, December 23rd, we drove 3 hours to visit family. Again, the drive was a trial. On Christmas Eve, I saw my old physician and asked point blank for some muscle relaxers and sleeping pills to get through Christmas until I could see my current primary care physician. It worked a little and I finally got some rest.

We made it through Christmas and drove back home. I called my doctor but she didn’t have any appointments until the following week. The day after Christmas, I had an appointment with the chiropractor again. Then I went grocery shopping and noticed that my left arm began to tingle near my elbow. My husband had previously scheduled time off for about a week during this time, which was the only way we managed when my pain was so acute. The next morning, however, he went back to work and I woke up to pain and tingling in my entire left arm. By afternoon, it had spread to my trunk and up the left side of my face.

I knew this was definitely not sciatica and definitely needed medical attention. My doctor had no openings, so I went to an urgent clinic. I had to bring the kids. The doctor there said I should go to the ER to rule out a stroke. My husband got off work to take the kids and drive me to the ER.

During the intake, the PA mentioned that he had seen MS manifest this way, but I took it with a grain of salt because he mentioned many other things as well. He did a quick neurological exam and there was definitely a difference in feeling between my left and right side, although not much of a difference in strength. He ordered a CT scan which came back clear. I was told to follow up with a neurologist. The next day, I had my husband do the tests that the PA did and I noticed that I had a loss of sensation on my right side as well. I never had the pins and needles feeling.

I saw my chiropractor again and she agreed it was best to follow up with a neurologist and recommended a name as the one the ER had suggested had no openings until nearly February. By the time of my appointment with the neurologist, I no longer had the pins and needles feeling on the left side of my body. However, I still had a lack of sensation all over. It’s a strange thing to be numb everywhere. He thought it was probably the reaction to a virus but ordered an MRI and blood work to be safe. Online research told me that Guillan-Barre syndrome was most likely.

My MRI was on January 15. Before leaving the hospital, I started feeling dizzy. Later the day, I got a fever. For the rest of the week, I had flu symptoms–as much as I could tell. I didn’t have muscle aches because I couldn’t feel anything. I had a follow-up appointment to my MRI on that Friday but I had to cancel because I was sick.

I got an email from the hospital that morning that my results were in. I wasn’t prepared for what I read.

Mild to moderate burden of white matter lesions with a pattern and distribution which are highly suggestive of a demyelinating process such as multiple sclerosis. Comparison with prior examinations would be helpful, as available. CSF correlation is suggested as clinically warranted for further evaluation.

You guys. I jumped out of the chair and broke into tears. I paced around my room as my kids played outside my door, my daughter using my phone to watch a video. I couldn’t break down like I wanted. I didn’t want my kids to come in and find me crying. I didn’t want them to hear me. I pulled myself together, whispering, “It’s going to be okay. We’re going to be okay,” over and over again. I couldn’t call my husband, so I sent a message to my besties through our online chat. They were unavailable. I made myself take a shower…I might have kind of lightly slapped on my cheeks a little to pull myself together. When I got out, my daughter was bored with my phone, so I called my husband at work instead of on his cell, which I only do in emergencies. I couldn’t make it through the first sentence of results before choking up. He came right home.

I just let myself take it easy for the rest of the day. I did some research on MS. I did research on things it could be other than MS. I have had strange symptoms for years and always tested negative for things. It was hard to tune out that voice in my head. A large part of me really did think maybe it was a false positive. However, I didn’t have consistent symptoms let alone clinical proof of anything else. I had nearly all the symptoms of MS. By bed time on Friday, I had exhausted myself. I decided that I was pretty sure the radiologist wouldn’t say it looked like MS if he wasn’t sure there was some way to tell the difference between MS lesions and other kinds of lesions. I began to resign myself to an inevitable diagnosis. It was a tough weekend. I focused on staying positive and not letting my mind leap to the worse possibilities. I also didn’t want to push processing it all. I was sad and grieved. I felt it was important to feel that and not push it aside.

On Monday, I called the neurology practice to get a new appointment. They gave me one a few weeks out but called back later in the day to fit me in earlier. This signaled to me that they must have thought it was important to see me.

A few days later, I saw a different neurologist in the practice. She repeated what the MRI said. She explained the next step was a lumbar puncture.

The LP was scheduled for January 30. I was told it would take about 2 weeks to get the results. Some of my feeling had returned by then so I did have a bit of pain from the procedure itself. However, I was mostly worried about the possible spinal headache that can happen after a lumbar puncture. Indeed, that happened and the drama of it all (a separate post) made the first week go by quickly. Some results began trickling in. They weren’t the smoking gun, but were things which would rule out other conditions which can cause lesions on the brain. Due to google sleuthing, they looked negative and things looked more and more sure to be MS.

Finally, the results for my O-bands came back. Unfortunately, the result that I could see just said “comment.” I called the office but they wouldn’t give me results over the phone and instead set up an appointment for me. I was 99% sure then that it must be positive as I’ve never been given positive test results over the phone.

Monday, February 18, two months from when this all started, I was diagnosed with MS. I had four O-bands in my spinal fluid.

We talked about treatment options and my medication arrived by mail nearly a week later. Wednesday, February 27, was my first day of treatment. I am not treated with steroids at this time as I have had reactions to Prednisone in the past. We will discuss other options at my next appointment in about a month. We will also talk more about management and how often I can expect to need MRIs etc. to check the progress of the disease. I’ll update this post as needed. 

I want to add that life doesn’t stop during all of this. I homeschooled my kids, even on days I couldn’t leave the bed. I did hire babysitters (an ongoing process) so I could rest as I no longer senselessly pushed myself through exhaustion. However, I was able to finish writing a book, edit, and market it. It released 18 days after I got my diagnosis.