Tuesday, December 19, 2017

2017: The Year of My Diagnosis

This year, all my diagnoses came rolling in like a snowball after 5 and a half years of living in a dry, arid desert with no answers. 

I would have meltdowns every week. “Why is this happening to me?”, “Why are all these tests coming back negative when I feel so horrible?”, “Why don’t any of these doctors care?”

It would be the same questions I’d wonder about every single night. For 5 years. 

This year was about taking control. I decided to “fire” some of my doctors and find new ones who were more proactive. 


MRIs, CT scans, EMGs, Nerve conduction studies, Tilt Table Tests, Urodynamics, Cystoscopies, Echocardiograms, Colon Transit Studies, Hearing tests, and enough blood to feed a coven of vampires, were some of what it took to get to my diagnosis.

2017 year started off horribly. I saw a new neurologist, the same doctor who would later solve my mystery. At that point, she just agreed thought that I had conversion disorder, and I went into a deep depression. This was such a devastating moment in my life that I remember it like a flashback in a movie. I had gone in feeling like I had all my eggs in one basket. I felt hopeless, so I avoided all follow up appointments with her. Until she personally called me months and months later to ask why I cancelled my appointment, and if I could please come in because there are results and treatment options she’d like to discuss with me. 


Little did I know when I got there, I’d have a bomb dropped on me. Stiff Person Syndrome. A rare neuromuscular disease. 1 in a million. What was Stiff Person Syndrome? I had never heard of it, but I was in awe that she thought she solved my case. I started treatment right away, and it worked. Who would have thought that a doctor who once thought I had conversion disorder would be the one to figure out the puzzle while I was busy ignoring her for months?

How far I could move my neck back before and after treatment.


Later that week actually, we traveled to Cleveland Clinic, where I was diagnosed with POTS. I started getting helpful weekly fluids because I was constantly dehydrated which was no help to my POTS. 

I had also gone and seen my new gastroenterologist who had diagnosed me with intestinal dysmotility based on my Sitz Marker study. We’ve tried a couple of medications but so far they haven’t worked. 

I’m being listened to. I’m being treated. I’m being validated. Everything I wished for every night for 5 years. And I took a moment to be proud. There were so many nights I wanted to give up. There were so many times I thought the world had a grudge against me. But the world didn’t have a grudge against me. It just wasn’t my time. 

Getting fluids.


There is still a suspicion from my doctors that some form of Mitochondrial Disease is at the root of all of this, but alas, I won’t know for a while, because the specialist at the Neuro hospital just went on maternity leave. 

So to the undiagnosed warriors out there, you might be worried you’re losing your mind. You’re not. I will always say that waiting is the hardest part. Especially if you’re a complex case, because many doctors who don’t know what to do with you will blame your illness on whatever they can. Which is often your mind. You know your body so well. You’ve lived in it your whole life. If you know something is wrong... something is wrong. If you need to fire your doctor, fire your doctor. YOU have power. More so than you might think. Your diagnosis day will come. But for now I want to commend you for how long you’ve been waiting. I want to commend you for carrying this burden of not knowing around with you. And most importantly, I want to commend you for the fact that you’re still fighting. It will be worth it. 

2 comments:

  1. Your story is SUPER inspiring to me. I am also dealing with a struggle that is extremely similar. This may be an odd question but how did yoir diagnosis of neurogenic bladder come about? Is if part of your syndrome? I have suspected issues with my spine and am experiencing lack of sensation/urge to urinate. I am only 27 very young like you. Thanks so much for your time!

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    1. Hi there!
      If you're dealing with a similar struggle and feel comfortable, please shoot me an e-mail so we can chat if you want!

      I was diagnosed with a test called urodynamics. Definitely not the most comfortable test, but worth it for some answers. To be completely honest, we have no idea which, if any, of my illnesses it correlates with. Which is frustrating! But I believe we'll find out soon enough, and of course I'll update! Thank you for reaching out!

      Michelle

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