MS

Raw

I need to know

Do other MSers feel it too?

A sudden rawness

Burning

Tingling

In the tongue

Lips

Palms of hands

Soles of feet

Eyelids

MS?

Is it the myelin being destroyed

By my own cells?

Most uncomfortable

Anxiety-inducing

Go away now.

Health

The journey to diagnosis: Why so long?

I want to talk about the journey to ms diagnosis. For some, the trip is brutally short. Bam! They wake up and their whole left side is paralyzed, or they’re blind in one eye. Terrifying. No question that any person would head to the hospital, or at least the doctor and they would be taken seriously.

Usually, a trip to the ER would mean an MRI, possible lumbar puncture (sooo glad I avoided that!) and subsequent diagnosis of multiple sclerosis. Some get picky and call it CIS (clinically isolated syndrome) until the monster rears its ugly head again, hence the multiple in multiple sclerosis.

I suspect many people in this position start connecting the dots of other strange symptoms they’ve had for years, once the inciting incident of the diagnosis journey appears, with the exception of those diagnosed very young, of course. I can’t really speak to that though, because that was not my journey.

What about those who present with weird virus-y symptoms?

The first episode of fatigue, brain fog and vertigo when I was 22, had me sleeping in the back of my orange Westfalia on the streets of Puebla, Mexico, alone, peeing in the sink for three days. I figured it was a strange Mexican virus – thankfully not from Montezuma!

The second incident two years later, in Lagos, Portugal, I was stuck in a tent in a cinderblock wall campground, with stereos blaring on every side, peeing (sometimes unsuccessfully) in bottles, in front of my boyfriend. I knew then he was a keeper! 😊💕 Okay, bladder issues are certainly an ms symptom but enough about urine!

A couple of months before my first relapse. I sold the van to my brother. He never knew this story. Sorry dude! 😬

I had one more relapse the following year, during my final teaching practicum. The monster’s timing is exquisite. The doctors that I saw during these times, in the early 1990s, checked for parasites and infections because of the travelling link but when they found nothing, they shrugged and pushed me out the door.

Then, the monster slept. With the exception of some ear-splitting tinnitus when we lived in New Zealand which was ascribed to stress (believable as we were living on a student’s income halfway around the world with a newborn), I had no relapses for about 13 years.

After the birth of our third child and subsequently returning to work part-time, I started having these weird ‘blips’, that I again thought was a virus. Pretty soon, I realized it was hitting me every six months or so, knocking me out for longer each time.

There was no paralysis. No blindness. No alarming symptoms that justified an emergency room visit. Just an exhaustion that felt like the power of gravity had increased ten thousandfold, a weird bubbly feeling in my head and an all over body ache that made me feel like I’d been poisoned.

I saw so many doctors during this time, and every single one of them listened to my symptoms, frowned, shrugged and told me to stop working so hard. Or maybe I was depressed. Or it was just a virus. Or it was idiopathic. That last word, meaning ‘they just can’t figure it the hell out’ was said by a very tall, male doctor looming over me in his office, forcing me to crane my neck to look up at him. The subtext of his message was ‘get over it, lady’.

Two problems

I have two problems with this. First, the number one symptom of ms is fatigue, which was my number one symptom. Also, I live in Canada which has one of the highest rates of ms in the world (MS Society of Canada estimates 1 in 340 people), yet NOT ONE of the 15-20 doctors I saw ever mentioned it.

I don’t think this is solely an issue related to the difficulty of diagnosing multiple sclerosis because it is such a misunderstood, unpredictable, individual disease. It’s a women’s health issue generally. I have heard so many stories about women’s health concerns being dismissed or downplayed or worse, drugged by overworked, distracted doctors.

Why is this? Do doctors really think women have nothing better to do than come to their office to ‘whine’ about something that’s ‘all in their head’? I’ve gotten equally dismissive treatment from both men and women doctors, so it’s not a patriarchal problem. It’s as though those that enter the hallowed halls of physician-dom are doomed to condescend to women, believing they’re choosing to spend their lives pretending to feel like shit, just to get attention.

I never watched the Golden Girls, but this clip explains it brilliantly.

You go, Bea! I would like to go back and have it out with some of the doctors who made me feel ashamed and ridiculous for pursuing answers when I knew something was wrong.

Conclusion

I am sharing my personal diagnosis story today because awareness is still so lacking about this ugly disease, despite how common it is. When I was undiagnosed, I searched all over the internet for people sharing stories like mine and found very, very few. Also, I think women need to support each other in managing their health, and that starts with conversation.

If you or anyone you know is experiencing strange symptoms, don’t ignore them. Advocate for yourself, you know your body better than anyone else can. Don’t let doctors blow you off and don’t stop searching until you get the answers you need.

Doctors hate it when you use ‘Dr. Google’, and you do have to be really, really careful. But until we sort out a healthcare system where doctors aren’t working on an assembly line, it seems to be the most knowledgeable, and least condescending doctor around. No offence to any of the doctors out there with integrity, I just haven’t met any of you.

Do you have a crazy diagnosis story? Please share, I’d love to hear from you.

❤️ Amanda

By the way, it was a naturopath that finally listened to my story and first mentioned the words multiple sclerosis. I was finally diagnosed 23 years after my first relapse.