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