Today I got a new diagnosis. Logging into the patient portal, I saw I had one new unread message. The test results from my skin biopsy were in. Looming, I read it and then I reread it again.
Confused. I think I read that right. It said that my results came back and fit the diagnostics for having small fiber axonopathy.
I type into my google search bar. “What is small fiber axonopathy?” You know when they say not to diagnose yourself on webMD, they are right. I wasn’t diagnosing myself, since it said I already had it, but reading about it when you’re home alone is not the best for the emotionally labile.
It turns out axonopathy was harder to find, and that it just meant that I had nerve damage specifically along the axon of the nerve. The axon is the center part of the nerve that sends the electrical signals.
Nerve damage. So I essentially had small fiber polyneuropathy as my doctor had predicted. Even though this didn’t seem as serious of an illness as my mind was taking it as, my mind was definitely running with it… a NEW diagnosis. I think just having any diagnosis made it more real. It made it more so that a great thing that I wasn’t a crazy person and that it was all in my head.
Right here, they had given me definitive results that it was … all in my nerves. Well at least a portion of my illness. So I cried. An ugly cry. That Kim Kardashian ulgy cry.
Why? I mean, I was told that this was what I was predicted to have. And it should be a good thing that my doctor knew what he was talking about and could easily pinpoint an issue I was having. BUT, it just felt too real.
It now made sense for why my limbs felt numb and that they were falling off. It was no longer a matter of me being “hangry” that my body would shake. It wasn’t that I didn’t have enough calories in me, but that my body was going through a crash. This is when I experience the neuropathy the most.
When I’ve over extended my body, the numbness creeps in along my arms and legs. Like dead weights. I turn into a drunk, functioning, but a little less mobile.
This explains why it was so uncomfortable to hold the steering wheel driving home everyday after work. It also explained why I had hard time holding a book, while trying to read on a park bench.
Having some answers is worth crying about. There is some joy in finding answers that you’ve been looking for for a few years. But then there was sorrow. Deep grief. Is this my reality? I am so young, yet my hands shake like I am elderly.
Did you find “A New Diagnosis” helpful? Share your experience below.
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I got the same diagnosis two days ago. You have clearly written exactly how I feel/felt! Now it’s real. After two days of “poor baby” I’ve found my way back to taking the bull by the horns and running with it! Thank you for putting it into words! Sending light for your journey!
I love your comment! I’m glad my post helped you! Your comment helps me as well! It’s interesting writing a blog about this, because I don’t know if anyone is ever reading it or relates in the same way. I am glad you were able to get some answers and are able to pick yourself back up and able to move forward. Having bad days are part of the human experience, but the secret is putting our energy into what we can control! 🙂 xoxo