Have you ever had a burning question that you desperately wanted the answer to, but no matter how much research you did or people you asked, you still couldn’t find it? Welcome to my health journey.
If you’re here because you voted on my Instagram story for me to share my health journey with everyone, then thank you!! If you’ve just stumbled upon this post out of pure curiosity, then welcome! I have been wanting to share this because it’s been an absolute roller coaster of a ride — and it’s still not over.
I’m not trying to make this story dramatic, as it’s really not. But it is a long and frustrating one. And I’m hoping that in sharing this story, not only do I maybe find some leads for myself, but hopefully provide some leads or sense of not being alone for others who may be in the same position.
Okay so what’s going on with me, you ask? What has sparked this year long journey of WTF’s, countless appointments, 6+ doctors, lots of time on google, lots of patience worn thin, and at the same time inspired my burning love for gratitude and appreciating everything around me?
Well in March 2017, at 24 years young, the healthiest and the most active I’ve ever been in my life, I lost my vision…three times. Yup. That obviously sounds scary, and it was. Of course if you’re following me, you know that it came back and that I am not currently blind (I am grateful for this every day). The first time that it happened, I didn’t even know it happened. The three episodes were quick (no longer than five minutes) and seemingly nothing to worry about if they were to have happened not within a few days / weeks of each other. Honestly had it not been for any other physical symptoms, I probably would’ve brushed it off. It was only after looking back at these moments that I realized how scary it was.
The first episode I lost vision in both my eyes, but the next two episodes it was only my right eye. After the second vision loss episode, the next day the right hand side of my face underneath my eye went numb. And as weird as this sounds, so did my eye. You know how if someone blows into your eye, it’s uncomfortable and your eye gets dry? My eye didn’t get dry. If I had an eyelash in it, I couldn’t feel it. (This loss of sensation lasted for about 8 months).
Additionally, over the next couple of weeks I developed a frequent hot-cold burning sensation in random parts of my scalp. The spots would feel like they were burning, but when I touched them, it was ice cold. All of this mixed with the fact that I had progressively gotten more and more tired.
I’ve been anemic in the past, and due to the fact that I don’t eat a ton of red meat and I am quite small, I figured I was anemic again. But this fatigue was much stronger. I went from working out at the gym 3-4 times a week, to not being able to at all as I was way too tired, all the time. And I progressively became cold, constantly. It felt like I could never keep my body temperature up.
I had gone to a walk in clinic about my fatigue in February, and when I told the doctor that I sleep on average 10 hours a night, and am still exhausted (even if I sleep for 7-9 hours, I’m still drained), he told me that this was normal and nothing to worry about.
With these new symptoms, I knew I needed a doctor I could work closely with so I got a family doctor. I met with her and she ran some blood work which came back normal, and she sent me to the ophthalmologist, as she suspected Glaucoma was causing my eye issues. The ophthalmologist did as well, but when I passed the eye exam with flying colours, he was worried it was a bit more serious so he referred me to a neurologist. How serious did he think it was? Well, he thought I was possibly displaying the early stages of Multiple Sclerosis.
Of course, an ophthalmologist can’t diagnose this. And as there’s no history of MS in my family, my priority level wasn’t that high, so I had an appointment booked for 6 months later.
Meanwhile, my fatigue got much worse. I no longer had energy to hang out with my girlfriends, or really do anything for that matter. My mental energy was high, and I wanted to do things, but my physical energy completely declined. And the brain fog was insane, I was forgetting conversations I just had, couldn’t concentrate at work, and felt like I was losing my mind. And it only proceeded to get worse.
After hearing great things, I booked an appointment with a naturopath. She was by far the most attentive doctor I’ve ever had and asked me questions I’ve never been asked by any doctor before. Together we found out that I had a sensitivity to 32 different foods, with extreme sensitivity to dairy, yeast and barley (which would explain the horrible 48 hour hangovers I get, right?).
Still with me here? Sounds like these food issues were the root of my problems! My naturopath said she had heard of the burning sensations in one of her other patients who had a dairy intolerance. So, problem solved. Easy peasy lemon squeezy!
Or so we thought.
Okay that was kind of dramatic. But really, that’s what we thought
So, I did what anyone would do after finding out they’re intolerant to dairy (and literally everything else, including soy, wheat, corn, rice, oranges, barley, bakers and brewers yeast..). I binged on some cheese to say goodbye, and went gluten and dairy free.
And besides my stomach issues, nothing got better..
I met with the Neurologist and based on her analysis everything nerve wise seemed fine, and she didn’t think it was MS. But, she didn’t know what it was either. So she sent me for an MRI of my brain and said if it came back clear, that everything “must be fine”.
I got in for the MRI two weeks later, and I am happy to say it came back clear. No signs of clotting, blockages or tumours. So that was some really good news! But left us back at square one.
A few more months went by and a few more symptoms appeared. My fatigue got even worse, to the point where I spent a week working from home because I didn’t have the energy to physically go to work. My brain fog was so bad that while driving in Banff with my friend that was visiting, I completely lost my bearings and had no idea where I was or where I was going (which is a LOT scarier when you’re driving). My body began aching all over, and I dropped 10 lbs in the matter of two weeks. The weight loss really made me start to worry. I’ve struggled for as long as I can remember to gain weight (the “you should eat a cheeseburger” jokes are beyond old and annoying, and just not okay at all), so dropping that much in such a short amount of time for no reason brought me down to a pretty scary weight for my height.
With diet proving to not be the main cause of the issue, we kept looking for the root cause. Working with my naturopath, and my family history, Hashimotos and/or Graves Disease came up as strong possibilities. These are both autoimmune disorders that attack the thyroid, which can cause almost all of the symptoms I’ve been having, especially the sudden weight loss. But unfortunately, any tests done by a naturopath aren’t covered through the health care system, so I had to get these done by my doctor. So back to the doctor I went and explained my concern about the thyroid issues, and she referred me to an internist.
Another month or so goes by, which brings us into the end of November 2017. I’ve always gotten a case of bronchitis almost every winter since I was a kid, so when I started getting a tight chest and having trouble breathing, it wasn’t anything new to me. I don’t like taking antibiotics, but all of the echinacea, vitamin C and oregano oil was not helping my breathing. So reluctantly, to prevent passing anything on to my coworkers, I headed back to the doctors.
She took a listen to my chest and told me everything sounded fine, there was no infection but that she’d send me for a lung function test. As she was writing up my referral, and I was about to leave with no answers on why I was having trouble breathing, she did a double take and saw that my thyroid was enlarged. Bingo! That’s gotta be it. Right?
I got booked in for my thyroid ultrasound, and afterwards was called back into the doctor’s office to discuss my results. I knew it, it was all stemming from a thyroid issue!
….well, not quite. Not at all actually.
I learned that my thyroid was covered in cysts, by they were benign and nothing to worry about. And my doctor insisted they couldn’t be causing my issues. They also found that my cervical lymph nodes (which btw are in your neck, I had to google where they were because the name threw me off) were unusually enlarged, but that could be due to a viral infection. So I was given instructions to go back for a follow up ultrasound on my lymph nodes in 8 weeks time and make sure I wasn’t going back while I was sick, which was no concern.
During this time, I had my appointment with the internist, who ordered some recent blood work, and noticed a slight heart murmur and palpitations. He asked if I usually get palpitations to which I said yes, quite frequently (I honestly didn’t know it was abnormal). So, off I went for an ultrasound on my heart to check for any abnormalities (which do run in the family), and I had to wear a heart monitor for a week.
At this point and time, I had now been to countless appointments, and had 3 of my main organs checked out, all of which seemed to be okay, so I was very thankful for this…despite the fact I had no answers.
My blood work came back normal again, and I went for my lymph node follow up as per the doctor’s instructions, not thinking anything of it. And then I was called back into the office.
The C word.
To be honest, through the past 10 months, none of my doctor’s showed any type of concern. I was coming in with these problems, they didn’t know the answers, but they weren’t life threatening so I was referred here and there and everyone went on about their day, including me. Though frustrating for me, it was also a very non stressful process. I’d laugh and joke with my coworkers that I had a mystery disease and that if I didn’t show up to work one day, they’d know why. But it was all making light of the situation, and even though this was changing how I lived my life, I feel like there was never any deep, serious concern of something really bad being wrong by myself or anyone else. It had to be some sort of vitamin deficiency or allergy or something. So when I went for my follow up appointment, that was the mentality I had.
She told me she reviewed my blood work and that the thyroid levels were fine, everything was fine. But my lymph nodes weren’t. They were still enlarged quite a bit. To put it in perspective, your lymph nodes are typically the size of a bean when enlarged. So when they are enlarged due to filtering out an infection, they can get up to 1 cm. Anything over this size is considered abnormal. And when you have reactive lymph nodes, they will swell when there is an infection, then begin to go down once the infection is gone. Well, two of my lymph nodes 8 weeks prior were 3 cm, and 8 weeks later with no sign of any infection, they were still the same size.
She began asking me some questions, and she asked me where the enlarged lymph nodes were.
“I have no idea, somewhere in my neck”
“You mean, you can’t feel them…they’re not tender?”
“No, not at all. Only time I’ve ever noticed anything was when I went for the ultrasound, having my head tilted back really constricted my breathing. Otherwise, no pain when I push on my neck looking for them”
“Hmm.. okay, but you’re not having any changes in weight, and no night sweats right?”
“Oh actually that reminds me, I forgot to tell you last time I was in. I lost 10lbs really quickly without trying or eating differently. But no, no night sweats”
Well, friends. Unbeknownst to me, I just casually described the biggest main symptom, confirmed another symptom, and linked all of my other symptoms, to Lymphoma. Aka, lymph node cancer.
That’s when the mood of the room quickly changed. She had a slight bit of concern when she reviewed the results initially, but by the look on her face now, there was a deeper concern.
She explained to me that though the ultrasound technician suggested the nodes were likely reactive, they still suggested a biopsy. And since I can’t feel the enlarged lymph nodes, we have no idea how long they’ve been this size. She also admitted she was relatively concerned, but before sending me to the surgeon for a biopsy, she wanted to look at one last option that could be causing the swelling. That option, was seeing an infectious disease specialist. If from his evaluation and testing he doesn’t think I have any infection, then it’ll be off to the surgeon with her one and only suspicion of what could be the root cause of all of this.
And, well. That was it. I left with a referral, no knowledge about Lymphoma, and went back to work. I caught my parents, aunts, and best friends up to speed, and didn’t really research much. But, my parents suggested I get a second opinion.
From my experience, when you have a family doctor, if you go to another doctor for a second opinion (unless they are a naturopath), you won’t get one. I had gone to a few for second opinions earlier in the year and had gotten a “you’re not my patient, I can’t give you advice” type of answer. My naturopath hadn’t been responding to my email updates (which was unlike her) so I knew I couldn’t get an opinion from her without making and waiting for an appointment. But luckily for me, our old neighbour back home in Ontario is a great family doctor.
I gave him a call, gave him the Coles notes version (sorry y’all, you did not get that version today), and said lay it on me, what do you think?
“Well, Lymphoma is possible, but it’s not very likely due to the time frame, if it’s been a year you would likely be very sick right now. Have they looked into Lyme Disease yet?”
And the answer to that, was no. Though my mom asked me from the start to ask to be tested for Lyme disease, I had never asked nor thought to. He advised me that if I have a good relationship with my family doctor, to go to her and ask for a chest x-ray to see if they can see anything in my lungs that would explain the trouble breathing and chest pains, but that also if it was lymphoma, at least a more severe case, they would be able to tell through a chest x-ray.
So, back I went. I basically live at the clinic now, and I brought up the x-ray as my chest pain was more frequent, and the possibility of Lyme disease.
Immediately, she discounted Lyme and said I don’t have a fever, joint pain, nor did I have a rash. Though from my research, not everyone gets the rash, and there are tons of symptoms of Lyme disease which every single one of my symptoms falls into this, I knew in a few weeks I’d be seeing the specialist on this, so I didn’t argue and just asked for the x-ray.
Turns out, my clinic has a lung specialist that works there and he was in that day and could see me right away. So I re-explained all my symptoms to him, he asked me some more questions, then he also voiced his concern about the possibility of something “more serious, such as Lymphoma”. The verdict – a lung perfusion and ventilation scan and x-ray to check for clots, blockages, and enlarged nodes in the chest. And if that comes back clear, a CT scan on my lungs.
So, where are we now?
Well, that last part happened this past Tuesday. I went for my lung scan and x-ray on Thursday, and that same day I got two calls from my doctors office. I really wasn’t overly stressed about anything, but let me tell you. When you go for a test, and get a call back that same day, that definitely gets the heart racing.
I answered the first call…
“Hi, I’m just calling to let you know that we’ve booked your appointment for the infectious disease specialist, its (etc)”.
Phewf, outta the woods. We’re in the clear.
5 minutes later, my phone rings again and my doctor’s office comes up on the call display. Thinking they left something out, I answer the phone like it’s no biggie.
“Hi, I’m calling because the results for your diagnostic test came back, and the doctor reviewed your results, he’d like you to come in”.
Immediately, I want to throw up.
Stuttering and shaking, I ask “Wow, the test from today?”. She says she’s not sure which test, but that it was the internist who requested I come in, and he sent the request in yesterday, and that it’s not urgent. Well, if it’s from yesterday, it’s definitely not about my lungs. Thankfully.
If you’ve made it this far, THANK YOU. Truly, I appreciate your interest in this, as I feel like though we’re nearing an answer, I’m still in the dark. This has been a years worth of confusion condensed into a hefty blog post, but hey I’m sure someone will get to the end of this page!!
I made it through all of Friday with no calls from the doctor, so maybe I’m jumping the gun here but I think it’s safe to say the lung test came back okay? My follow up appointment with the Internist I assume is to review the results of my ECG, and my appointment with the Infectious Disease Specialist isn’t until March 7th, so I’ve still got a few more weeks until we can dig deeper into what’s going on. My follow up appointment with the lung specialist is in April, so unless I hear from him this coming week, then I assume the next steps from him is a lung CT scan if my breathing and chest pains don’t get better.
As for now, I am incredibly grateful for the health I do have. Life could be so, so much worse. I try to practice gratitude every day and my health in its current state is still something I’m grateful for, and this whole experience has taught me who and what’s important.
I still don’t have answers, and I’ve promised myself I’m not going to stress over anything until I do. Though hearing my doctors express their concern for something as big as cancer is slightly stressful, I know that things like this can be a simple, obvious answer that has been overlooked. So until I have definite facts, I’m doing my best to not think too deep into it!
Anyways, if you’re reading this, and you have any thoughts, comments, suggestions, directions, anything, please leave a comment below! If you’re experiencing anything like this, whether it be Lyme Disease or Lymphoma or anything else, or know someone who is, get in touch! I’d love to chat with you/them. And if you want to stay updated on this journey, subscribe below! You’ll get the posts straight to your inbox. I promise to keep you all updated!