Good morning, Debbie (@dbeshears1), John (@johnbishop), and chapanddrew8 (@chapanddrew8)!
Oops! It’s afternoon, twenty-seven after twelve. Let me correct myself: Good afternoon!
And let me (if you will) write a combined reply. Reading your posts makes me realize how unsure I am of my own PN diagnosis. When asked, I’ve become quick to reply: “My PN? Oh, yes, it’s idiopathic sensory-motor PN. And large fiber, by the way, should you be wanting to know.” But how do I know all that? How can I be so sure? Where did I derive its many terms ("idiopathic," "sensory-," "-motor," "large fiber")? I’m afraid it’s a bit of a patch-together; the patching done gradually over the past 15 months (since my diagnosis). The first term ("idiopathic") was given to me by one of my two neurologists only minutes after he’d finished administering my EMG. I remember the moment well. It was late on an August afternoon. Storm clouds were pouring in over the Rockies. (I’m seeing the scene through the exam room window.) I thought it strange––and a little unsettling––that after telling me I could put my shoes and jeans back on, the doctor drifted away from me and stood by the window, saying nothing, for what felt like hours but was only a minute or two. When he returned to where I was sitting, he said, “Ray, I’ve good news and bad news. Which do you want first?” Then, without waiting, he went on: “The good news is I ruled out the more serious diseases like Parkinson’s and MS. The bad news is peripheral neuropathy. To make the bad news somewhat worse, it’s ‘idiopathic,’ meaning we don’t know what’s caused it. Worse yet, there is no known cure.” That was the first time I’d heard the term “idiopathic.” The other terms (“sensory-,” “-motor,” “large fiber”)? I gleaned those over the ensuing months, running each term past my doctor to get his seconding. (“Idiopathic” remains one of my favorite expressions. Although I knew what it meant, for the giggles, I checked its etymology. My OED gave me for “idio” = “peculiar,” and for “pathic,” adjectival for “pathos” = “suffering.” I laughed to imagine myself saying to people in a long checkout line, “You may want to let me get to the head of the line. I’m afflicted with a peculiar suffering,” stressing the word “PECULIAR!” 😀 )
Whoa! I’ve gone on too long. That’s what comes of a lazy at-home Sunday.
Here’s wishing us all a good week!
Ray (@ray666)
Ray - I get you. Over my first 6 years ( different doctors, 2 medical university hospitals, different states), the descriptions of my PN throughout visit notes were a hot, scrambled, confusing mess of medical jargon. Not all words describing my condition were used at once. The one consistent term used was Peripheral Neuropathy, or PN. Then another doctor’s notes spelled out PN as Poly Neuropathy. I asked that doctor- “OK, help me with what P in PN stands for, is it ‘Peripheral’ or ‘Poly’?” His helpful answer was “Well, you could say both”😵💫. Extra words were sometimes added, like “severe” to indicate my level of disability from it. Axonal was always used, SFN was never used… Everything was always a tongue twister.
So as I was seeing my NC Neurologist for my last time before setting up shop with new doctors in SC earlier this year, I pleaded with him to write down for me exactly how I’m supposed to call this thing so I can accurately tell all my doctors, friends, and neighbors, that going into my 7th year with this I wanted to get it right. So he wrote “Severe Axonal Sensorimotor Peripheral Neuropathy”. He said technically I could add poly in there somewhere if I wanted to but wasn’t necessary. He drew me a diagram explaining large vs small and my EMG results and why he says I don’t have SFN. He explained why he didn’t believe it was CMT though he acknowledged I hadn’t been tested.
So Ray - sometimes we just have to laugh about it don’t we? I sometimes find it easier to explain to folks what I know it’s NOT. So I feel your pain (because lucky you, with your PN, you don’t feel any, lol) Deb