PN: From Anger to Acceptance

I’m on Tegretol! I wrote a long post about why that is. You can find it in this forum under my name. It’s an interesting story.

"I could see his mind working as I asked question after question. His focus on me was laser sharp."

He's a keeper! Hang on to that fellow! 🙂

Ed - My doctors never really asked for much of my thoughts on causes really. When I tried to suggest something, I'd get an immediate and almost definite "NO, IT WOULDN'T BE THAT" while I would then wonder why they were so certain when they had no answer on what it was. I felt like there was a standard checklist of tests & scans and labs to draw, and if no answers, then Idiopathic like most PN's, so next case please. I still believe I'm the only person in the world without an MRI though 🙂 (I wasn't able to have one because of metal in my body until I had it removed 3 years ago, but now they say getting an MRI won't offer different information).
I realize we're not the only ones exhausted and frustrated; our doctors are too. The medical "business" and financial pressures have changed healthcare a lot too. But connecting with people here has helped turn my focus into doing what I can do to help myself live with what I've been dealt. I try to stay positive as much as I can and as hard as it can be. I remind myself many times about what you've drilled into my head to focus on what we CAN do. Recalling those dark months of when I couldn't hold a fork to feed myself or needing people to do things for me more humbling than that makes proud of what I've overcome and determined to stay in control as much as I can. But it takes some effort and positive energy, and some occasional kicks in the butt!

@dbeshears1 Debbie, staying positive isn't easy yet, we need to remain as positive as possible, and you are absolutely right, many doctors that I've been to are frustrated. Think about the years they spend learning medicine only to have folks like us walk in their office and all they can do is shrug their shoulders. Ed

Ray, So....some of these people who are in the profession of PT just don't get it. Not all, just some, need to clarify that. I've had some good ones. Being 79, you are supposed to expect to have numbness and bad balance? That is complete bull. My mom died in 2019 at 95 from kidney disease, no numbness, excellent balance. So, being 79 has nothing to do with it. That's somebody who can't help you. After all, you are 79. Unbelievable.

I do ageism in reverse- I ask for the PT with the most years of experience (usually the department head). They will have had the most exposure to people with neurological issues.
This is painting with a huge broad brush, but in my experience and observation, the education, practice, and interest of many younger PTs is in Orthopedics. Neuropathy is a land far away and rarely heard from.
I had to wait four months for an opening with the department head in the large practice near me, but it was totally worth it. I go back to see him every year and a half for a few visits to update my home program and address any bad habits I’ve gotten into with walking.

Ed– Your mother's resilience should serve as an example to us all of what we might aspire toward. It is so easy to give up. And what waste giving up is! I came from a family of giving-uppers––my mother, father, brother, aunts, and uncles––and, in the end, each paid a terrible price. –Ray

Hello, @centre. I agree: waiting to work with someone with experience is best, well worth the wait. I've adopted that practice: I ask, and if I can see in a therapist's eyes lots of good intentions but a dearth of experience with PN patients, I'll wait; an experienced therapist can always be found; the patience to wait is key. –Ray

I'm 55. I am a diabetic since 2017 and diabetic neuropathy started with my feet (tingling, numb, painful nerve strikes, etc..) in 2018 which nerve damages eventually spread into my calves and thighs plus waist. Until this day(2023), I have been dealing with incurable, unmanaged, uncontrollable diabetes II and painful lower body neuropathy (PM) and not mention ED….

After all the doctors, neurologist, emergency rooms, hospitals, etc.. , plus prescribed medications (pre-gabapentin/gabapentin, Juniva, Metformin, Duloxetine, etc.. I awfully regret to spend thousands and thousands of dollars (Out of Pocket and/or Insurance)…

After 5 years with such conditions and sad experiences, you DO NOT want the neuropathy (PN-nerve damage) to quickly spread and affect your entire feet, calves, thighs, waist and hands as it is an extremely terrible feeling along with very poor state of mind, anxiety, stress, nervousness with daily activities, etc.. And sadly, impotent for the last 4 years and specialized ED doctor(s) want 20K+ to make you believe that they can help with it. I declined!

Needless to say, REAL answer for these serious mental and health complications and conditions were experienced as "NO CURE" !

The only solution was to amputate feet, legs, and hands. I could not live with myself with such decision. I will continue to endure and suffer which I have accepted to convince mind it is a part of the remaining style way of my life. Most importantly, my disability claim was also denied with lawyers and by judge. I was devastated!!!

I am attempting to remain positive with the job market. Currently, unemployed. I adopted a 4 year dog (German Shepherd) to help encourage walking at least 4 times a week which helps body, muscles, and aggravating feet and leg nerves and simply ignore the pain.

My dog is amazing! I seriously regret not adopting dog long ago.

My advice is to eat healthy, "exercise', and most definitely "Save your Money"… and maybe consider a dog to enlighten your spirits!

My prayers are with you …

Ray, my mom was a tough old bird. She started dialysis at 93 and when she was 94, she purchased a new microwave that came with a 2 year warranty. Not good enough. She asked if there was any way she could extend the warranty, you know, pay a little extra money for another year or two. Answer was no. I got a kick out of that and never forgot it. She lived one more year. That is the frame of mind she placed in me and I've placed that in our grown children. I tend to be stubborn, don't give up. I guess the apples don't fall far. Ed