Hello, amkie (@amkie),& cc julbpat (@julbpat), John @johnbishop),

You’re quite right, I’m one of the fellows with large fiber neuropathy. Thanks to lots of reading, I arrived at that conclusion largely on my own, only to have my layman’s diagnosis confirmed by my doctor when I straightforwardly asked him, ‘Mine is large fiber, is it not?’ I was surprised – and a little amused – to hear him replay, ‘Well, of course, Ray, it’s large fiber!’ I drove away thinking, ‘Mmm, if I hadn’t done all that reading and then flat-out asked (large, or small?), I might never have been told.

As John and others on the Forum know, my assessment of my neuropathy (symptoms, progression, effectiveness of the EB-N5 supplement I was prescribed and have been taking for 15 months) has been clouded by the onset of a sepsis infection last March, which resulted in several symptoms similar to those caused by the neuropathy. Recently, if friends ask, ‘So, how are you feeling nowadays?’ I have little choice but to say, ‘About the same.’ If they go on to ask, ‘Is it your neuropathy or your sepsis?’ I again have to answer as honestly as I can: ‘I don’t know – because the symptoms overlap.’

At this time, the most I can say is my balance is still wonky, especially early morning, if I’ve been seated too long (20-30 minutes), and late at night. I keep a cane nearby but use it only when I think it’s necessary. I find early morning, after sitting, and late at night, if I rise, stand in place for a count of 15 (1, one thousand, 2, one thousand, 3 … etc.), aim my body in the direction I’m about to head, then step off slowly but with a certain amount of deliberation (eyes up, not on the ground,), after about 30-50 steps I’m able to go about with reasonably good balance. It’s as if it takes the 25 seconds, the 3-0-50 steps, etc., for my brain to snap into action. (I just finished reading Jill Bolte Taylor’s ‘Stroke of Insight,’ so, at the moment, I’m all rah-rah about brain plasticity.)

A second symptom that I’m dealing with every day (be it my neuropathy, my sepsis, or a sinister combo of the two) is poor endurance. I’ve reason to suspect that my nagging shortness of breath is a gift solely from my sepsis; I never experienced shortness of breath like this in my pre-sepsis days, when I was only contending with my neuropathy. As a symptom, it’s lessened (I’m breathing more easily now) compared to my early sepsis days, but it’s still bothersome.

That, in a nutshell, is my life with large fiber sensory-leaning (maybe a little small fiber in there, too) polyneuropathy. Sepsis has been a complication, making it harder for me to speak with clarity about the neuropathy – but I’m happy to say even more/answer questions/whatever might be helpful. In the meantime, with sincerity …

Best wishes & Cheers!
Ray (@ray666)