The Road to Diagnosis

I knew something was wrong as I walked uphill to visit Propeller Brewing Co. in Halifax. It was a beautiful, albeit cloudy, day in May 2019, in a city that had drenched me with rain since I’d arrived two days prior.

As I trekked up to Cogswell St., my calves burned, then worse: piercing pain along the sides of my lower legs forced me to find a bench and take a break halfway up the hill.

I’d been experiencing similar issues while trying to get back into a running routine, but the fact simply walking at a leisurely pace up a hill caused me concern.

It’s not the first time I’ve felt this pain. As a kid, I often complained to my parents that my legs hurt when we were walking at a brisk pace, having to take a break on a bench. In about 2006/07, I also experienced a similar issue while walking quickly or doing aerobics. Around this time, I was also diagnosed with myasthenia gravis, a neuromuscular disease that causes skeletal muscle weakness. I assumed that this issue was a symptom of my myasthenia, and from what I can recall, it went away around the same time I started treatment for myasthenia.

Why would it flare up now?

Well, like all good patients, I’d miss doses. Or forget to bring my medication with me on a trip. And I felt fine. I was running consistently. I ran four half marathons and countless races. I stopped taking my medication altogether. Not a single problem with my calves.

Once this issue began in early April 2019, I started taking my medication every day, as prescribed. With no relief. Runs were excruciating. I’d have to stop and walk within minutes, unable to relieve the pain unless I sat down and rested my legs for 5-10 minutes. Even then, the pain would pop back up as soon as I tried running again.

And now I couldn’t even walk uphill to a brewery without resting.

Since over a month of taking medication wasn’t fixing the issue, when I got back to Calgary at the end of May I spoke to my physiotherapist, who then referred me to a physiatrist. I also visited my family doctor, who referred me to a podiatrist to determine whether it was simply a case that orthotics could fix. She was hesitant to refer me to a neurologist, the type of doctor that would manage my myasthenia, without ruling out other causes (I was originally diagnosed in Montreal, and the neurologist I saw once in Calgary had since retired, so it wasn’t as simple as calling to make an appointment).

That’s a lot of “ists.”

And so began several months of meeting new doctor after new doctor.

I met with the podiatrist first, in mid-June. He sized up my feet in about 30 seconds and told me my arches were too high and strong to require orthotics; this was not my issue. However, my dorsiflexion (how far you can flex your toes towards your body) is poor, so he ordered a set of x-rays on my feet and ankles and asked me to book back in a month’s time.

Another two weeks and I finally got in to see the physiatrist at the end of June.

For those who’ve never heard of a physiatrist, like me, this type of doctor specialises in musculoskeletal disorders. Short of seeing a neurologist, this type of doctor seemed my next best bet in figuring out what was wrong.

I told the physiatrist my background and how I thought myasthenia was the culprit. He did a few tests and told me he didn’t think this was myasthenia – and, if I’d had it at all, it was likely in remission based on his observations (surprise!).

Then the hammer: he suggested that my symptoms were caused by Chronic Exertional Compartment Syndrome (CECS) in the lateral compartment of my calves. The physiatrist referred me to yet another doctor: sports medicine.

Unfortunately, the first appointment they could book for me (remember, this was now early July) was September 5 and there was no cancellation list. But I called back the next week and managed to have it moved up five weeks to July 31.

At my next visit, my physio was initially surprised at the suggestion of CECS but then admitted that it made complete sense considering what I’d been experiencing. She also said that poor dorsiflexion is often seen in people with CECS, as well as hip issues, which is the reason I’d started seeing her in the first place. We modified our treatment plan accordingly. I also let my massage therapist know and we started fascial stretching in my legs to help treat my condition.

Another call to the sports medicine clinic and I secured an appointment on July 18.

In the meantime, I saw the podiatrist again – he confirmed that there was nothing in my feet or ankles that would be causing my issues and agreed with the tentative diagnosis of CECS. Three for three.

The closer my appointment got, the more nervous I became. Did I want him to confirm the tentative diagnosis, meaning almost-certain surgery, or did I want it to be something else, and undergo months, possibly years, of further tests and treatment to find the cause?

In the end, the sports medicine doctor agreed it looked like CECS.

The hitch was that there’d been a change in companies that provided the testing kit for CECS. Because the company had changed its packaging, approvals were held up with Health Canada and clinics all over the country were running out of the kits. They didn’t expect to be able to run the test for months. There were 15 people on the waiting list in front of me, dating back to May.

If my diagnosis was confirmed, due to the work I’d already put in with my physio and RMT, the sports medicine doctor agreed that the best treatment would be surgery.
Obviously, I’d consulted Dr. Google a bajillion times by this point, so I’d known surgery was a possibility. But what really hit me in the gut was the 3-9 month wait, since it’s considered elective.

If you add the wait for the testing kit to the surgery wait, that’s potentially another year (or more) without being able to run. If I’m able to at all.

I cried. Then left.

And all I could do was wait for the call to book my test.

What is CECS? Don’t despair – Part 2 has the answer.