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Living With Large-Fiber Neuropathy

Neuropathy | Last Active: Mar 6 4:20pm | Replies (35)

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@dbeshears1

Ed - My doctors haven't been Mayo unfortunately. I tend to believe that what they really mean to say to me is that they wouldn't change my treatment plan regardless of whether they knew if it was also SFN or not, the treatment of which has been basically doing nothing at all except for refilling Gabapentin prescriptions (actually, my PCP is doing that now). I think what they don't realize is that I can "Connect" more and target my learning a little more directly if I could confirm as much as possible about my condition. Sometimes I think they overlook how they can make it easier for us to help ourselves with the most detailed knowledge on our conditions we have. These las two doctors are also the ones who say No to an MRI having a chance to help rule in/out anything. (the first Neurologist said No, and when I moved to a new state, the new Neurologist just rubber stamped the last Neurologist's report and said "We'll just leave everything as is unless something changes".
In the meantime, I choose to identify as having both and borrow what seems to help symptoms from folks who share my symptoms. When a doctor tells me my severe temperature sensitivity in my extremities or itchy skin is not due to PN because it doesn't fit what their thinking of PN is, I absolutely know they're wrong. Either way, I know both types have overlapping symptoms, and some may be unique, so I try to keep up with all types of suggestions for remedies.
I' glad you're regaining balance after your Covid bout. My body often feels weaker after events like vaccines or antibiotics and am always thankful when the good days start coming back!

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Replies to "Ed - My doctors haven't been Mayo unfortunately. I tend to believe that what they really..."

A footnote, Debbie, to your assessment of clinicians––not all, only some: Last Wednesday, I met with my neurodoc's NP to discuss the results of my recent genetic test. Entering the wrap-up phase of our meeting, the NP asked, "Is there anything else you'd like to discuss, Ray?" I mentioned my swollen feet and ankles and my suspicion that my many years of use of the hypertension drug Amlodipine might be to blame. She turned to her laptop to check Amlodipine's side effects. I saw her brow furrow as she read. Finally, she said, as much to herself as to me, "Well, I've just learned something." We'd a brief chuckle, and then I told her how refreshing it was to have a med school-trained clinician admit to still having a few things she might learn. I assured her that I'm the kind of patient who respects a clinician when she says, "I just don't know the answer to that one, Ray." [P.S. I'll be discussing my swollen feet and long-term Amlodipine use when I see my PCP next week.]