What it’s like being diagnosed with MS

This is the tale of my being diagnosed with a chronic autoimmune disease and how I navigated it all in isolation amid a global pandemic. I wrote this as a means of processing what I have been going through.

The Call

I knew if I received a call from her that day, it could only be to deliver bad news. I got home around 15:30 in the afternoon, having all but put it out of my mind. The phone rang — it’s Kaiser.

“Hello, it’s … from Kaiser Permanente. We got back your MRI results and they did find lesions on your brain and spine… it looks like it’s Multiple Sclerosis… MS. Do you know what that is?”

I breathed a sigh of relief. Good, I’m not crazy! I knew there was something wrong. Wait… what… I have MS? The shock set in. I could feel my throat tighten as I fought to hold back the tears. The rest of the conversation is a bit of a blur. I did my best to hold my composure on the phone, but the floodgates opened as soon as we hung up.

After months of various symptoms ranging from mildly annoying to truly debilitating, I felt betrayed by my body. A body I had only just learned to love after years of medical and social transition. 

I cried myself to sleep that night.

What is Multiple Sclerosis?

Multiple Sclerosis is an autoimmune disease where the immune system attacks the central nervous system (brain and spinal cord). These attacks leave scarring on the brain and spinal cord which can be seen as lesions on MRI.

More specifically it causes the myelin sheath to be striped from axons. Axons are the “wires” that connect neurons in the brain to various endpoints throughout your body. Myelin is the insulating layer protecting these connections.

Without the myelin sheath, these connections can degrade and short circuit. This can lead to both visible and invisible symptoms. For instance numbness or weakness in a limb.

For a better description of this disease, I recommend checking out the information offered by the National Multiple Sclerosis Society here.

The Steroids

I started high-dose steroid infusion therapy the following day for three days. While the needle left large bruises on my arm the infusions themselves were painless. Each infusion was one hour long. 

At the clinic for infusion therapy

The weird thing was that I got this weird chemical taste in my mouth each time. I highly suggest opting for some juice when/if they offer it. Water doesn’t help. 

The steroids do have some side effects. Insomnia being one of the more common ones, I didn’t sleep for days. It took about a week before I was able to get a good night’s sleep again.

The Mind Games

People keep telling me how impressed they are with how well I am taking all of this. What they don’t know is that I can’t shake the feeling that I am a walking time bomb. Constantly thinking about the “what if’s” of things that haven’t yet occurred. Always looking over my shoulder waiting for the next relapse to rob me of a little more of myself.

How will this affect my ability to work, if…? What if I can no longer…?

The pandemic has left me with far too much time to think in solidarity with no one but myself and my two dogs to talk to.

With that being said, I do my best to approach this from a positive place. Call me stubborn, but I still have a lot of life to live and I am not going to let MS take that from me. 

So while I am admittedly a bit of a mess (just in general), I am not laying around feeling sorry for myself. It’s not always easy, but I am strong.

The Neurologist

I finished infusion therapy on Friday and saw my neurologist the following Monday. 

I prepared for the appointment by creating a list of all the symptoms I had experienced in the past few months. I had experienced some cognitive (memory) problems, so I wanted to ensure I covered everything during my appointment. 

This document seemed to be very helpful and allowed her to quickly narrow down what questions she wanted to ask me. 

She performed a complete neurological exam. Watched my walk. And showed me my MRI images. 

We discussed my prior history. I described two incidents in my mid 20’s which I thought could be related, but I explained I could only speculate. 

The appointment was nearly an hour long and after jotting down all of my information she explained that I would likely have a diagnosis of Multiple Sclerosis, but that she had ordered a number of tests to check for MS mimics. We would discuss possible treatment options at my next appointment.

The Eye Exam

Eager to find answers, I promptly scheduled the tests she ordered. I got my labs done that same day and scheduled a Visual Evoked Potentials (VEP) test for later in the week.

For this test, you sit in front of a screen displaying an alternating checkerboard pattern. A number of electrodes are attached to your head to measure the response of signals from your eyes through the optic nerve to the brain.

There was a sticker in the middle of the screen that the nurse told me to look at. Which was actually more difficult than it sounds. My vision particularly on my right eye is quite poor and the experience was kind of trippy.

The test is performed on each individual eye while wearing a patch on the other eye.

This test is supposed to indicate possible damage to the optic nerve which could be a sign that you had optic neuritis at some point. Optic neuritis is a common symptom of MS.

I had experienced blindness in my left eye for about two months in my mid 20’s. The eye doctor I went to seemed skeptical of my claim and told me that it was likely just stress-related and would dissipate on its own. He seemed eager to get me out the door.

The test came back inconclusive showing deficiency in both eyes, which didn’t really surprise me. 

The Fatigue

Of all the symptoms I have experienced the fatigue is the single most debilitating. It can be wholly overwhelming. 

My neurologist did prescribe me something to help with the fatigue which I am thankful for. Without it, I would often feel incapable of performing even the most mundane of tasks. 

I’d take a shower and would need to lay down after because I was just so done. I would make the bed and need to rest after because I would feel so exhausted. I couldn’t concentrate, I couldn’t focus, and most annoyingly I couldn’t see clearly. 

I still have days where I struggle, even with the medication, but fortunately most days I do ok. I am learning to pace myself and to listen to my body. To rest when I need to and to not push beyond my limits.

The Labs

One by one my labs came back over the following week. Ruling out one mimic at a time until there were none left. I tested negative or within the normal range on all of the tests we performed.  

The Enhance Images

Since my first round of MRI images was done without enhancement, my neurologist ordered a new set of images with contrast. She ordered MRI’s of the Brain, Cervical, and Thoracic spine. All in all, I was in the machine for just over 2 hrs. this time.

It had been about a month since my relapse, so while I was certainly concerned about it prior to getting my results, I wasn’t really surprised that we didn’t see any activity on the images with contrast. 

All in all, we identified about 25 lesions most of which are in the brain, but I also have several on both the Cervical and Thoracic spine. 

The Diagnosis

I had my follow up appointment today and received an official diagnosis of Relapsing-Remitting Multiple Sclerosis (RRMS).

The diagnosis was of course expected at this point. After five months of symptoms, Dr. visits, and various tests and images, the writing was on the wall. As such the news was met with little to no reaction from me. 

It’s as they say… if it walks like a duck and quacks like a duck, it’s probably a duck.

Given my clinical history and my MRI findings, I easily met the McDonald criteria for diagnosis. 

I was happy to note, that I didn’t need to get a lumbar puncture. Something I really wasn’t looking forward to. 

We discussed treatment options, both in terms of disease-modifying therapies (DMT), and in terms of the treatment of symptoms. 

Given that I have spinal cord disease she suggested a more aggressive approach to treatment, which I concur with. I was happy that we seem to be on the same page.

Final thoughts

After months of ups and downs and more tears than I care to count, I feel optimistic. 

We have decided on an aggressive approach to treatment and I feel confident that this approach will provide me the best odds of living a fairly long and normal life. 

It’s been rough going through this on my own in isolation, but I am strong and hopeful for the future.

Title Photo by Robina Weermeijer on Unsplash