Fear & Small Fiber Neuropathy

Fear & Small Fiber Neuropathy

Fear. It’s almost all consuming today. For the past week or so I’ve had this uncomfortable buzz in my arms. It starts on my shoulders blades and goes down the backs of my arms, then swirls above my wrists and onto the palms of my hands.

I’ve never had this type of symptom before, but I recognize the pain. It feels like being shocked from an outlet. A million years ago my hand slipped when I was plugging in a lamp, and my fingers pushed forward and made contact with the prongs when they were already part way into the outlet. A zap that made me jump and hurt like hell; electricity. That’s what this feeling is running down my arms, and with each day that passes it gets stronger. I have so many different weird things that happen to my body that I’m never surprised when something new pops up. But when it stays, I get worried. Now with this feeling buzzing through me non-stop I’m starting to get really scared.

At my last neuro visit my doc talked to me about getting genetic testing. He said the words amyloid and genetic and I remember thinking ‘huh?’.  After a decade of being sick and eventually KNOWING what was wrong with me, (dermatomyositis and small fiber neuropathy) I wondered why I’d never heard these words before in relation to me. He asked if I wanted to be tested to see if my small fiber neuropathy was amyloid or genetic. Or amyloid and genetic?? I was nervous and my brain was so busy thinking that when I left that appointment I was like, what did he say?? I hate that when I do that. I should record my doc visits because I do that a lot; I get home and try and recall the conversation and yah…

It’s been a few months since my new neurologist said the words amyloid and genetic, and I said yes to the testing but I heard nothing back. I’m guessing my insurance said no to it. I figured, well the next time I see him I’ll be prepared. I’ll look it up and have questions. And time went by. Now- the buzzing arms. I looked up amyloid and didn’t like what I saw. It sounded like me. In all of my reading over the past 5 years or so, I never saw the word ‘amyloid’ anywhere, but if I did I would’ve known 5 years sooner. It fits. All of the crazy squeezing sensations, feeling like I’ve a compression stocking over my body and it’s squeezing like a snake, the immediate sensation of super-gravity; feeling like I’m being pulled into the ground with g-force like pull and having to go flat to relieve it….it’s hard to live life if you have to keep laying down. All of the weird dysautonomia stuff. I’m going to have Big C go in to the appointment with me tomorrow. I need his brain, his memory retention lol, and the moral support.

Alright it feels good to write it down. I’ll be back. 😉

 

 

 

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