Learning Past Cause vs. Quality of Present Life?

@dbeshears1 - Deb, on your comment from 2 days ago....I agree with you 100%!! I have learned more from the folks who participate on the Connect than I do from several docs. I think I know why. We are what you might say on the "front lines". We live with this damn disease every day and one way or another, we figure out how to manage it. The doctors do try, don't get me wrong but until they walk in our shoes with the pain, numbness, poor balance, use of canes and walkers, they don't know what it is like. We do, we share our experiences and know what it's like. Also, several docs I've seen are frustrated in that they can't help me. Those doctors are the ones I continue to see. And, as long as we post, we can learn from one another, in my opinion, the best source of info could be ourselves. Keep moving! Ed

You’re so right! I know we share our experiences with our doctors, but none of our individual doctors is a data repository and doing a scientific collection for research or sharing. So this group is valuable “front line” stuff! I saw where @johnbishop posted a link today about some PN research funding tucked away in a congressional Department of Defense bill that has a good chance of being approved. I believe that’s where the most hope lies, with government providing funds which provides medical programs incentive to prioritize focusing more research to help the growing number of folks afflicted for many unknown reasons and no treatments known. Trying to more actively tackle this PN medical mystery will hopefully help next generation and keep people with active lives, and in the workforce!

Ed – (@njed)

That's an interesting recollection you end with: " … when my PN started up years back, it all started on the LEFT side." In all the months you and I have been comparing PN symptoms, we almost always reveal similarities. This may be the first time we're finding a difference. As best I can tell, my symptoms, from way back, long before I got my PN diagnosis, were always symmetrical, giving me more trouble neither on the left nor the right. I imagine there's some neurological explanation for why some of us experience our PN on only one side (although it may progress to both sides) and why others of us, from the beginning, experience our PN on both sides with no sensation of difference from side to side.

Ray (@ray666)

@ray666 Ray, let me clarify. My PN started on toes left foot, then side of left foot. Within 12 - 18 months, it then started on right toes and right foot. When the drop foot started, the left foot was first, 2 months later, it was bi-later. Since about 2018, it is the same on both sides. Numbness is equal left and right. I guess it took a little longer for the RT side to catch up. When it progresses, it is the same on both sides, no difference. Weakness is equal as well. Ed

@dbeshears1 - That makes sense to tuck away funding in a Dept of Defense bill. Why not? Anyway, we know this will require a lot of money for research and who else has the resources available. I too hope it gets approved and we'll keep an eye on the progress. Fingers crossed!

Hi, leelees (@leelees)

I hadn't noticed your reply. I'm sorry. However, you don't say if you're seeing a neurologist. I'm guessing you are, or otherwise you might not be calling your numbness a neuropathy. I went for years with an ever-worsening balance, but not even my primary doc (who is a good primary doc) thought to suggest a neuropathy or to refer me to a neurologist. The symptom you do mention is numbness. My neurologist tells me I have some numbness in my feet, and that's why I have such poor balance, but so far it has not progressed. The advice it seems you're looking for will be best given by someone dealing with progression. I am sure someone will post soon. Stick around. You might try your question under a different topic heading. Or create a new topic. That might be best. Good luck!

Ray (@ray666)

@njed Ed, that makes sense. It's entirely possible my PN started as something one-sided, but in those early years, what I was feeling was so minimal and so brief I paid it hardly any attention. For all I know, it might have started out more on one side than the other. This stuff is such a mystery! It's no wonder many of our doctors are at a loss when it comes to giving advice. About all I can do on my own is pay attention to what is today so that tomorrow may not be too much worse. – Ray (@ray666)

Ray - I'm curious about our Neurologist saying you have numbness in your feet. Do you not sense they're numb? Like asleep sometimes, or lacking some feeling when you hit something (like the floor, your shoe, the accelerator)?

Ed - My vision changed too almost immediately. 6 months later (at age 52) I suddenly needed cataract surgery, not a gradual progression to it (both eyes. not just left). My vision had become blurry as well, but mostly because they became so dang dry! They're still very abnormally dry. I know you once suggested Sjogren's, but my last Neurologist said No - since we already knew my Idiopathic PN was axonal sensory whatever that it can't be Sjogren's. He blames the dry eyes and my dry mouth I have it on the radiation I received, though that timing is definitely not right because my radiation came 4 years after the dryness and start of PN. My eye doc did think the eye dryness "could" be due to PN but also said that some folks (of all ages) just have more trouble than others.

Debbie (@dbeshears1), Ed (@njed)

Add me to the list of folks with dry eyes. That was about the only advice my eye doctor had for me. I use Latanoprost for pressure, not because I'm having a problem but because there's history of glaucoma in my family. My only complaint––the same one I've had for years––is double vision, both distance and close-up. I always ask about cataract surgery, but my doctor invariably says, "Only incipient, Ray, you're not ready yet." So my only takeaway from the visit: Use an eye lubricant for dry eyes.

Ray (@ray666)