Living With Large-Fiber Neuropathy

@dbeshears1 Debbie - Wow...I went from old to young in a week! Thanks. If you have a doctor who believes you can't have both small fiber and large fiber peripheral neuropathy, then they are welcome to look at my final test results from a series of testing that took place at Mayo in Rochester over a period of four days. The findings are conclusive and clearly state that I do, in fact, have both small and large fiber. It exists and still does. Ed

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!

Hi, Steve (@stallen)

I’m pretty convinced I, too, have a mix of large, small, and quite likely autonomic PN. None of my doctors ever gave his or her opinion straight-out; I had to ask, to get them to say, “Very likely.” I’m convinced however, that large-fiber is the valley’s biggest gorilla; for now, anyway, that’s how I’m announcing myself: “idiopathic, predominantly large-fiber PN” (not that I go around announcing myself).

My legs, too, feel like they are getting progressively weaker. They may not be; it may be only because, with all mt sit-to-stands and walking (nothing like your daily 2-3 miles!), I asking more of my legs. I’m not sure. I sometimes think of my PN as a threefold punch to the gut: poor balance, a wobbly way of walking, and ever-weaking legs (all contributing to each other). There’s only so much I can do to improve my balance or steady my wobbly way of walking; I would like to think, however, that I CAN to something about strengthening my legs. I find myself focusing more and more these days on just that: strengthening my legs.*

*An awful thought: Might another one of PN’s cruel thefts––along with the theft of our internal gyroscope that helps up stand steady and walk straight––be the theft of our leg muscles birthright capacity to improve with exercise? Is that gone, too? That’d be a tough one to live with.

The results from my genetic test are inconclusive. I was impressed, though: well over a hundred genes had been looked at. Only one gene of all those genes was determined to be a “variant.” My printed report reads, “We interpret this variant as a variant of uncertain significance.” The NP said, folding and handing the report to me, “Dr. Wolff and I agree, there’s not much we can do with the results of your genetic test.”

And there endeth today’s sermon. 🙂

Cheers!
Ray

@dbeshears1 Debbie, I believe your approach to this is absolutely on target. Each one of us with PN know our own body. We know when things aren't right. My primary doctor, not neuro doctor ordered an MRI of the brain in 2015 and a follow up in 2018, all good. Little humor: She called me and said, "there's nothing there". We both laughed. As we know, in medicine, doctors will usually want to rule out the worse things first. After going to six various neurologists since early 2015 in four different states, I've come to the obvious conclusion that there is one heck of a lot of information about PN that doctors just don't know. I agree with you. I've learned more about my PN from others with PN. And, reading your various posts, you did have some unusual circumstances involving your onset of PN and no doubt, both small and large. I'd assume that as well and seek best treatment, if any, going forward on that basis.

So now you have Idiopathic Predominantly Large Fiber PN with Idiopathic Insignificant Deviant Variants?

Hi, Ed

That was my misreading of what should have been painfully obvious: round-the-clock cane use, by itself, is not going to help someone’s overall balance––like putting faith in Mary Poppins singing, “A spoonful of sugar’ll make all your PN symptoms go away!” 🙂

My misreading did at least get me to be less shy about toting a cane and to wield it proudly. That, in itself, I consider a positive.

And it did prompt me to ask my neuro doc’s NP, when I saw her yesterday, if maybe a not-too-$$$ session with a PN-experienced PT might give me some much-needed corrective gait coaching.

Ray

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.]

Hi Ray…one of Amlodipine’s primary side effects is swollen feet/ankles…I take 5mg…several yrs ago the doctor upped it to 10mg …immediately my feet swelled…had to go back to 5mg. Always amazes me what doctors don’t know about medicines. I went to my eye doctor a couple years ago with dry, irritated eyes. He put me on a steroid drop and went back about 3 weeks later…he said keep using the drops…I’d read that it should only be used for 2 wks due to glaucoma like pressure increase in eye.
The doctor left the appt and I said to asst, “I thought the drops should only be used for 2 wks due to increased pressure risk”? He left room.. .came back in with pressure tester and sure enough it was high…”stop using it “ he said!
Steve

Hi Ray.
I want to encourage you about he PT and gait coaching. My PT has shown me the importance of walking properly, for example. She noticed that because of my drop foot, I was not walking heel toe but bending my knee and being flat footed. She urged me to concentrate on heel toe because if I continued flatfooted, I would have negatively affected my knee and hip. It all works together.
God bless you on your journey. Charles