Progressive Polyneuropathy

Good morning, James (@jamessaxo)

I was surprised to be asked by one of my neurologist's nurses if I'd ever been a drinker. She was asking me that question in something like 2021 or 2022, yet I had quit drinking waaaay back in the early 1990's, 30+ years ago. She had asked her question because of what she called a 'shadow' on a brain MRI. She went n to say the shadow was nothing about which I need be concerned, but since I had been there to see a neurologist about balance worries, she thought she'd ask. That was the one and only time drinking was mentioned in the many discussions I've had since about my large-fiber PN.

Cheers!
Ray (@ray666)

What were your Leg Braces? Brand? Style?

Ray , thank you for that unexpected reply. I am 82 and only in the last few years have become fully aware of the damage that drinking can do. Used to think only the liver was effected. It is a powerful solvent. I read that METHYLCOBALAMIN, 1000 micrograms daily gets myelin growing back on those depleted nerves. Good luck.

Hello again Ray.
Yes, every hike or adventure, a hike or a walk around the yard begins with the first step and the another. That’s how I seem to start each day! But after the first few steps I’m feeling more motivated to continue. It sure would be easier to go back to bed. But that’s not an option.
Continue to challenge yourself despite the feelings of discomfort & balance related issues.

I’ve had lots of physical therapy. And then I’m tested for balance. I have NO balance at all. My balance is so completely lacking that I could no longer walk with a walker. My neurologist insisted that I use a power chair which I’ve had for three years. The peripheral neuropathy in my legs is completely profound two of the three large nerves in my lower legs are unresponsive i.e. dead.

Regards, Elaine

A few yrs ago I was picking up several body signals that things weren’t just right. Hot & cold sensations in both the feet. One could be hot the other cool. Annoying pains in the bottom of my feet. (The heals & ball areas). Tingling sensations in my lower legs below the knees.
I brought to the attention of my PCP. he did a brief exam & pulse checks. Said it was a vascular issue. I had a full vascular work up done. NOT vascular. This past August i saw a sharp neurologist. After a complete exam, bloodwork & EMG Test. Diagnosis was Large Fiber sensory Poly-neuropathy. At last some gave the answers to what was most annoying me.
Of course I wasn’t pleased as I really thought I was tending well to my health & fitness. After a short period of complaining to myself (and my wife), I dug myself in for the good fight! Yes; this really does suck!
What are our options? Only one.
Accept this diagnosis & gain as much knowledge as we can.
Accept that this is my new normal.
Don’t allow your condition to define you.
Re-set your personal calibrations & make the adjustments accordingly.
Not every day will be perfect.
The next day is a new startup. Take advantage of that going forward.
Good luck to all with PN

@cap5457 I really like your positive attitude. I've had PN going on 10 years and you nailed it with "make the adjustments accordingly" which is what I've done since the start. The knowledge you gain based on your diagnosis is one of the key ingredients needed to live with PN. You are right, there is only one choice.

Thank you for your reply. Yes there is only one choice. Acceptance & moving forward. Happy that you’ve also made that choice too.
This is not the sort of Club I was planning on as I was aging. But this site & other PN information sites have been a great resource center for me.
In the beginning we all assume that we may be the only ones suffering with this condition.
Stay grounded, focused & positive.