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.

17 thoughts on “The journey to diagnosis: Why so long?”

  1. You write so well and it’s so important that we capture all these stories to diagnosis. 3 to 4 times as many women are diagnosed with ms than men, but our path to diagnosis is ofte full of disbelief. I was one of those BAM people, but there are still a lot of pieces that would have led to the diagnosis earlier but were ignored

    Liked by 1 person

    1. Thank you Michelle! I think until the health care system becomes more holistic and there is quality continuity of care, which may be a pipe dream, the best way to help each other is by sharing our stories. Thanks so much for commenting! xo

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  2. Thank you for sharing this Amanda. Before I started my blog and met others with MS, I never knew there were so many people in Canada that are being diagnosed with MS. I might be wrong, but I think the health care in Canada is MUCH better than in the states. In the states it really seems like doctors are a little clueless and that is being polite.
    I remember the day I was diagnosed like it was yesterday and it was almost 18 years ago. I blamed it solely on living in the south. I was diagnosed literally 8 months after I moved from VT to NC. It is great we are all working together to raise awareness of this very ugly illness because it still seems that so many have no idea what we live with. I also think it is SO important that we all stand to support each other. I am so glad that I have the opportunity to get to know you and learning about your story is amazing!

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    1. Hi Alyssa,

      You’re absolutely right. There is no question that the health care in Canada is miles ahead of the States – but the doctors here seem just as clueless. My neurologist, who is the second one I’ve tried and I think the best I’ll find here, often tells me that certain symptoms ‘don’t sound like ms’ then those symptoms are confirmed as classic ms symptoms by other specialists or by 100s of msers. I just have to shake my head.

      I’m horrified to hear the stories of what people go through down there because they don’t have insurance. Every single person should have free healthcare, the current system is just another way to increase the class divide. Unbelievable. But let’s not get political. 😉

      I’m curious why you blame your ms on the South? Is it because of the heat? The dreaded fine line between getting enough natural vitamin d and overheating? Or is it something else?

      I am so glad to get to know you too! Thank you so much for commenting and being active on my blog, you’ve made me feel like I’ve joined another supportive community. I hope you’re having a fantastic day! ❤️

      Liked by 1 person

      1. It really is crazy that the US is the only developed country that doesn’t offer free health care. The political issues here are insane! I worry about pre-existing conditions becoming an issue very soon. We don’t have the best person representing us.
        I hate when so called MS specialist say certain things are not ms related, like headaches. My Neurologist says headaches and ms have no relation with each other. Like you I just shake my head.

        Honestly I blamed the south just for something to blame. The insane heat and humidity do not help, but truth is I probably would have been diagnosed regardless of where I was living.
        My husband has been dead set on moving to Canada for many reasons. I wasn’t sure about it for a while, but I do not have the patience for what we are going through. I hate to bring politics in, but I do not support the president at all. He is destroying this country. He causes my mind too much stress.
        What part of Canada do you live in? Are you happy there?
        I am so glad to meet you! !

        Liked by 1 person

  3. Thanks for addressing gender bias in healthcare. Having a disease that occurs in 1 of 10 women and it still took me 30 years to get diagnosis from the obgyn’s that treat women. Insanity and very real.

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    1. That is insane!!! I’m glad you finally got answers but women shouldn’t be stuck on ‘it’s all in your head’ merry-go-round for so long!

      Liked by 1 person

  4. Hi Amanda, thank you for sharing your story! I can’t begin to imagine how upsetting your long journey to diagnosis was. I was diagnosed with fibromyalgia 9 months after first eperiencing symptoms. I count myself very lucky to have had a young insightful GP. However about 7 years later when I asked my GP for referral to a Consultant to see if I could enhance my knowledge and manage my fibro better, the Consultant wanted to prescribe meds used in U.S.A to treat Parkinsons and had the nerve to say “Now what can I tell you that the last 100 doctors haven’t told you” . Needless to say I quickly told him he was actually the first opinion I had sought. He is also the last! My GP totally ruled out the meds suggestion!! I still work part-time but the past year I have just lived to work as the rest of the time is used recooping and recharging for my next class, with little left for my family or life. I’ve held of applying for disability because teaching gives me purpose and on the good hours when my head has no fibro fog…I wonder how I’d cope without that stimulation and financially on a disability payment.

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    1. Honestly I could write a book just about doctor incompetence/bully stories. I’m sorry you’re in that place. Once the balance starts shifting, it makes working really, really difficult. It is hard to find a new normal when you stop working but when it means you do have time for family and life, even just a bit more, it’s totally worth it. I hope your health perks up so you can keep teaching – it’s a hard job to walk away from!! 💕

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  5. Urrghhh the problem of doctors in the US is the focus on curing the symptoms rather than finding the cause. So sorry that it took so long for you to be diagnosed. Thanks for sharing this story. Indeed, we need to listen to our bodies and trust our instinct.

    Liked by 1 person

    1. So true. Until western medicine starts looking at the whole body/person, it’s just going to continue being big Pharma’s playground. With free healthcare in Canada, many doctors only allow patients to discuss one symptom per visit. How do these experts not understand the basic mechanics of the human body, that everything is connected and related?!!! So frustrating.

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      1. It is terribly frustrating. My husband was very sick years ago and I remember the doctor simply prescribing pain meds because my husband was feeling pain beyond anything imaginable. But, there was no desire to look into what was causing the pain. By the time we found a doctor who was interested enough to care, things have spiraled into such a bad state. Thank goodness everything turned out okay…but the long arduous process and pain were unnecessary. I shouldn’t complain and I am super grateful for how things turned out but looking back and reading these posts do get me soooo riled up.

        Liked by 1 person

      2. I’m happy that everything turned out alright for your husband. Sadly that’s not the case for so many in the ‘stick a pill in it’ system we’re stuck in. Except now people in chronic pain are being persecuted for needing pain meds and being denied relief because of the opioid crisis. It’s an opposite kind of insane!

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