My Diagnostic Journey : 10 Years and 5 Insurance Providers Later

First and foremost I struggle greatly with the concept of a filter, and a significant chunk of my vocabulary is “NSFW.” If this is not your cup of tea, which I hope has turmeric and nettle in it, then maybe we aren’t a match made in blog heaven.

Anyway, this year 2019 I am celebrating my 10 year anniversary of my first diagnosis. The first time someone said yeah, you’re in a shitload of pain all the time and that’s not normal, and we need to do something about it. Got my first little set of pills and was doing fine and dandy. As time went on things got worse little by little. Fibromyalgia didn’t seem to cover all my symptoms. I was in college at the time, and of course I did not want to deal, so I didn’t. Eventually it caught up to me and hit me like a metric fuck ton of bricks in the 3rd semester of my last year of college.

To summarize 2014 can be categorized as the absolute fucking worst. Luckily I chose to go Case Western in Cleveland, Ohio with hella amazing hospitals like a block away. The straw that broke the camels back as you might say, was when I fully lost feeling/use of my right arm for a couple days and reluctantly I dragged my ass into the ER. Got 5 specialist referrals, a 4hr long MRI, and some narcotics. Excellent.

Mind you I’m still enrolled in classes, have to do a thesis, pass a bullshit statistics class to graduate I’ve never attended outside of test days. My dean says (as we are discussing attendance policies),” I think you should really consider taking some time off, I don’t see how you can finish your credits on time with your condition.” To which I respond, “HOLD MY BEER BITCH” (except not because beer will make me vomit and get hives). When the financial aid ends, I end. We’re going to do this, heavily medicated, perhaps on opiates, and most likely from a toilet.

Long story short, it was a truly brutal semester. I did in fact complete much of my work from the comfort of my favorite bathroom stall with my trusty trash can to keep me company (Both ends,yuck). Worked my way through appointments with rheumatology, immunology, gastroenterology, endocrinology, & neurology all good fun. All the bloodwork all the imaging, and in the end two new diagnoses, more medications, more questions, more uncertainty, more worry.

At that point in time I was too sick to do much, full elimination diet, and even then barely tolerating food. Insomnia, fatigue, neuropathy, vertigo, hives, you name it. Once my Hashimoto’s thyroiditis (hypothyroidism) was diagnosed and treated I slowly gained back some of my energy. It was also reassuring to know I had neither any allergies nor gastrointestinal disease though my body had faked hives and celiacs for the past year. However in terms of my other new diagnosis the ever vague “connective tissue disease” being told not much else than I present symptoms common of many autoimmune diseases was far from reassuring. The solution at that time was to throw some steroids and plaquenil at the situation and see what happens.

There was also another third looming element that were white matter brain lesions. My first neurologist was like hmm idk I’m a tremor specialist. Thanks very helpful. And my rheum said interesting could be a head ache, but in your case could be MS. Uhhhh, what the fuck? Thanks for dropping your halfbaked guesses on me Dr.Asshat* really great for my anxiety as I’m processing this information at age 22.

I have that set of medications a while to get working but it was just not cutting it, pain, numbness, headaches, vision loss shit was getting worse in a scary way. So back to Dr.Asshat I go, because you know getting a new patient appointment is not happening any time soon. I’m a bit worked up, and in a lot of pain at the time. I also had to drive myself which I didn’t like because it caused you guessed it more pain. So I’m at the office, me and all the 60+ year old clientele the usual. Waited over an hour after I had my weigh in with the RNA, so I ask what’s up and they set my chart down somewhere and fucking forgot. As you can imagine for a person in a lot of pain, anxiety, I was upset and got a bit weepy when I finally got back to see Dr. Asshat. Im explaining how I was upset, pain, anxious, etc and you guys. This man has the audacity to say, “I don’t know why you tell me this, I can’t help you if you don’t stop crying I am not a psychologist” ——— safe to say I found myself another rheumatologist after that.

New not awful rheumatologist focused more on quality of life, got me sleeping(a whole 3hrs a night!), and most importantly sent my ass to get new glasses. This friends was a GAME CHANGER turns out I could not see shit because my eyeballs were trash. He did however suggest seeing Neurology again given I had 20/20 a year prior. But in the meantime I had far fewer crippling headaches and well, I could see.

My rheumatologist decided given the nature of things, and per the concerns with my eyeballs that I should probs see a neurologist that dealt with MS. So I booked an appointment about 5 months out because well that’s life in specialized medicine and then waited. After another 4 hrs of MRIs, loads of physical examination, and the doc video taping my tremor, (yeah I’m a novelty you guys, basically famous), we determined that thankfully at that point no MS diagnosis. The issue was as the doctor put it “all in my head,” or rather limited to my brain so onward we go in the diagnostic puzzle. We did also determine with the copious amounts of examination that the numbness and nerve damage to my right side was the result of a herniated disc in my neck that to be frank is an attention seeking little bitch and loves pinch and cause muscle spasms despite being in PT and receiving steroid injections for the past 3 years. So much fun.

Fast forward about a year or so I was doing alright living in a new city drugs were working, things were managed. Shit starts acting up again, medications aren’t doing it for me: time to readjust. Also time to find a new doc, which is perhaps more stressful than finding a boyfriend. Luckily after 8 years stalking physicians on the internet I’m pretty good at it and I find my soulmate Dr.Yang. He got my meds in order, referred me to a great migraine specialist, and just all around gave a shit about me as a person and all the crap I’d been through thus far. We love Dr. Lang*.

For a while I was dare I say pretty good, relatively of course, I was sleeping and only having flares here and there versus perpetual hell. But this is where our story gets interesting: a plague of strep throat landed me at the doc 3 times within a month (damn you filthy youths, jk love my job). However after closer inspection I didn’t have strep throat at all, I was just inflamed as fuck for no reason. Also covered in hives, which to be honest is almost always the case. Dr.Lang in this moment handing me a giant orange container and said I want to see something, here’s a 24hr urine sample (more on those in another post). And after some more testing, lots of itching and urine we discovered Mast Cell Activation Disorder, which in my case is also accompanied by Postural orthostatic tachycardia syndrome and Dysautonomia.

So, here we are 10 years later after all is said and done (for now), I have answers to the questions like: why am I always itchy? why are my ears ringing? why does my blood pressure drop when I blow my nose? and so so many more. I know however that it is likely my diagnostic journey isn’t over, when you have an autoimmune disease your body is always evolving or rather devolving. So cheers to 10 years and here’s to hoping the next 10 are at the very least a little less expensive.

*Names have been changed to protect the beloved and the shitheads