Learning Past Cause vs. Quality of Present Life?

@ray666 Hi there, what an interesting discussion! And, one I can also relate with, too! For me, I believe I've always been the third option - both. The curiosity just kills me, so I "have to know." I also love to learn things, and being a lifelong student really encourages that endeavor. Most days, I am focused on quality of life, today and moving forward, but honestly it just depends on the day for me. Having layers of chronic physical issues - and more acute ones that pop up here 'n' there - it depends on how I'm feeling and how frustrated I am. That determines the direction of my day. Most nights, I'm up researching things I've thought about from earlier on in the day, but sometimes I am too "tired" to care, so I focus on what I can do to just make it thru one afternoon or lesson my mental load. But, that's just me 🙂

Good morning, rivermaya34 (@rivermaya34)

I'm a third option guy myself, but because I know my love of puzzling things out can too easily result in my amassing a lot of trivial medical info about my condition––but at the expense of my body not getting some desperately needed exercise––I have to be always on guard. Because my day "job" ("job" in quotation marks, because I'm theoretically retired LOL! ) has me seated for long stretches in front of this MacBook Pro, I employ the tried & true Pomodoro technique: a kitchen timer to allow me 25 minutes of focused work at this laptop; then, bizzzzzz! to signal me: "Get up, Ray. It's time for a five-minute of stretch!" If I fail to obey the kitchen timer, I know I'll be disgusted with myself by day's end. And I've never really liked being disgusted with myself. 🙂

Ray (@ray666)

I’m definitely #3, but I started out as a strong #1, thinking, like cancer, a very quick discovery, diagnosis, and treatment was critical to finding a cure for me!
I knew that being #2 was critical, as I needed to learn to walk, get myself to the bathroom etc. and without being #2 I wouldn’t be where I am today: driving, cooking, and able to type however awfully. The process of trying to accept the cause/cure being unknown was slow. It started as 1 step forward, then 2 steps backward, until finally it’s more like 2-3 steps forward, then one step back.
So that puts me at being a #3, hoping I hit the lottery, and frustrated with trying to understand how doctors have no clue of my cause or a specific diagnosis, yet are POSITIVE an MRI will tell us 100% nothing. That little seed of doubt because I can’t believe they know “100%”, and me not being able to put my hope to rest is what keeps me up at night and has me with remnants of #1 patient type in my system.
But the main reasons I’m finally leaning more toward being a 2 vs 1 is a) Necessity to live and focus on maintenance and quality of life as a lot of time has passed and b) My realization that staying as a #1 became exhausting and had diminishing returns. My doctors already seemed exhausted before me, while they’ve been trying to crack the code for much longer than me. No matter what brilliant theories I had or trends I found for me, I had no resources or ability to test or prove them. It doesn’t mean I don’t still hope and dream, but my energies have definitely shifted to a more productive place for this body I’m trying to maximize use of.

Good morning, Debbie! (@dbeshears1)

I'm also a #3, leaning backward ever so slightly toward being a #2.

If we do win the lottery, we'll have to split the pot.

Like you, I'm a #3 because I can never quite shake a curiosity about what brought about my PN. Because I'm a determined #2, aware that what's all important in the immediate sense is that I keep my body in the best shape possible––aware, too, how readily I will "postpone" a day's exercise––I have to be forever reminding myself what it means to be a #2 and how critical it is that I am a hard-working #2. So, #3 fits me best: Do those daily workouts, but because I'm still curious about the cause, give the detective work some occasional attention (besides, not overdone, it's fun).

And not to be overlooked: Identifying as a #3 gives a person a chance to win the lottery. LOL

Here's my wish that you have a wonderful #3 weekend!

Ray (@ray666)

@ray666 - Figured I'd jump in on this one. More than likely, we all start out with the "what do I have"? What caused this? And what pill do I take to get rid of this? Then, after we see a few doctors and some tests, the reality begins to set in. More than likely many of us kind of end up with a number 3 scenario always wanting to know where it came from and fighting to lessen the pain, numbness, balance issues and other effects of PN. After years pass with no concrete answers, I feel many with PN will shift to that quality of life you mention. My neuro doc said that with my diagnosis from Mayo, even if we find out what caused this PN, it can't fix it. Personally, I'm now more focused on the quality of life. It is OK to keep an eye on the rear-view mirror so to speak but I'm more interested in what's ahead down the road and making sure it's a smooth of a ride as possible. If I can't change the past, I might be able to control the future. Best to all and as always...keep moving! Ed

Love that Ed, sums it up very well. I think I’ve accepted whatever it is and I focus on what I CAN do, but sure wish there was enough to know more about the “normal” road ahead for me so I can make more informed major life decisions for my spouse &I (like the major household move and purchase to new state we just did). I worry about ending up on the floor at any moment with permanent incapacity and needing to shift to nursing home for rest of life. (I don’t worry as much about God taking me permanently). I’ve asked the direct questions to doctors but for the few doctors I’ve asked, it’s been a quick and simple “I don’t know”, not even a wide range of possibilities, no elaboration at all. Ive never been able to even get what my “average” expectations should be regarding disability prognosis. They say so many of us have idiopathic PN, yet I guess they haven’t studied & analyzed how people have fared with it. I’d hope it would be like medicines or vaccines or other treatment expectations or disease post-mortems given like “30% got sore arms within 24 hrs, 10% ended up in wheelchair after X yrs, 60% lost ability to type or flip pages after Y yrs” etc, or even something as vague as “50% reported diarrhea and the other 50% reported Constipation”. That’s why I get stuck in the rut sometimes in wanting to know more about the likely cause - then maybe the group I best fit in is narrowed more so maybe my focus on best therapies to use can be narrowed, and I can be better informed for making big life decisions.
Oh well, absent that we move on, not fear the unknown and just keep doing what we think is best, and trying to find and learn from who we think are most affected similarly. And you’re right, moving is the solution! Sitting, getting weaker, and feeling sorry for ourselves will not help any outcome. One thing I am certain about is getting in the pool again today and doing my PT exercises because it’s a win-win in this awful heat!

Hello, Ed (@njed)

I also realize that expecting an answer to the question, "What caused this?" is a bit of a hopeless pursuit. I learned from watching my neurologist's face, the face of a man I trust. I'd no sooner begin to ask, "What do you think may have cau–– ?" and I see a veil fall over his face––the face of a man who's ordinarily eager to talk––like I was his toddler son about to ask, "Why's the sky blue, Daddy?" The lesson was clear as anything: Better to spend your time, Ray, going for walks (no matter how clumsy) and doing your stretches, strengthening, and balance work!

Ray (@ray666)

Interesting conversation. I would say at this point, I am more of a #2 person. I've talked to different doctors and all say that they don't know the cause and that there is nothing to do but treat the symptoms. I can live with what I have now, but it has gone from my toes to my knees over the years. I keep asking how to stop the progression, but like many of you, there is no answer. It has already impacted my ability to do things I had hoped to do at this point in my life. But I do what I can and am happy with that. I try to exercise and eat healthily as I don't know anything else to do.

I have mostly disavowed other areas of investigation. But this I am still following. Very complex issue, but based on the experiences of many that B6 toxicity is very common and continues to affect users well after blood levels return to normal. Also proposes a protocol for removing B6 from muscles where it does its damage. All info at this website seems well researched and you can get all of the information FREE. It’s a tough protocol to follow, but many on the site have claimed recovery. So here I am. I have taken B vitamin supplements in the past but don’t now and don’t know whether B6 was ever elevated. But it’s a chance.

@dbeshears1 Hey Debbie - It is difficult to know what is ahead...down the road so to speak because as we all NOW KNOW, life has its own weird funny ways of throwing an unexpected and unwanted cure ball at you....right between the eyes. Next thing you know it, you are told you have PN. I think you are absolutely doing the right thing as many of us are and that is to do what you can do and try to ignore what you can't do. Or, in some cases, figure out the alternative. I can't use my boat anymore because of PN resulting in poor balance. So, this weekend we booked a cruise for early next year on a BIG boat, one that I CAN walk on. Just got to figure out how to do what you want in a different way. Keep swimming and keep moving. Ed