PN: From Anger to Acceptance

Good for you, Ray!

Hello, @artemis1886

I am sorry to hear about all the difficulty you are having getting the attention and care you need. I've read posts similar to yours all too often. Every time I read one, I'm reminded of how lucky I am to have two good neurologists; one is a straightforward neurologist, and the other is a physiatrist. It's not that they're hovering over me, but I know they're contactable if I have a need or a question. Each has his own clinic, and mostly I communicate not directly with the doctor but with the doctors' NPs. I've learned to take in stride a certain delay between my asking a question and receiving an answer. Fortunately, I've been living with my PN long enough that I am rarely in need of a quick turnaround. I know, however, I realize I'm in a minority when it comes to being pleased with the attention and care I'm getting. I can only wish all PNers could say the same!

I wish you better fortune in the months ahead at finding a good team of clinicians!

Cheers!
Ray

Good evening @jakedduck1 and @ray666. Once again, you two have been able to spell things out quite clearly.......at least for me. It was 11 years ago when I was diagnosed (biopsy) with SFN. When I was walking across the parking lot after my appointment with my neurologist, I reflected on an empathic statement that he made after he explained the diagnosis. He sort of hung his head and said, "I'm so sorry".

And so, like you, I tried to learn about my condition and the options for controlling the symptoms. It wasn't until I met @johnbishop that I learned that there was no cure. He then introduced me to several current options for controlling the symptoms.

The concept of a "Progressive" condition had not reached me. Since that time, I have tried denial of the evidence, meditation, mindfulness, and mental therapy. Unfortunately......I think I may be winning the prize for speedy progression.

So thank you both for hanging in here with me. I appreciate your honesty and sincerity.

Chris

This is me exactly. Every new stage of this illness has me working on acceptance again.
My neurologist believes my case is presenting with a very slow progression that will always continue and will never really plateau.

@dbeshears1 Debbie, I noticed your post above...let me see, oh yea..."good OLD NJ Ed". Hmmm...old.... Could not let that go by! Kidding of course. But my theory to focus on what you can do and not what you can't do plays into the point of this topic raised by Ray, and I found the anger did lessen as I was able to realize the things I can do and still do today. Less, of course but I'll make adjustments to do what I can. Over time, we accept what we have but it does take time. You are right, we don't abandon hope for a cure, that lives within each of us but over time, as difficult as it is, we have to learn to live with PN and make those adjustments along the way. It's all part of acceptance. Wish all the best! Old Ed. 🙂

I am accepting my PN.I am working on being more active and working on my mental health to help me move on with my life. I can't let this disease become the focus of my life.
I am still researching and reading everything I can to see if I can find any information on alleviating my pain or, God willing, a hint that there is a cure.

Why Me? Why NOT Me? I am female and probably quite a bit older than the other commenters here (I’m 86).

My one brother had a stroke which caused paralysis on his right side and only junk language; he lived with those infirmities for 16 years. My older brother’s wife was diagnosed with ALS and was on a ventilator for about three years. My sister lived in a memory care unit for a number of years after being diagnosed with Alzheimers Disease Therefore, I have to ask “Why NOT Me?”

I was dx with PN and Sleep Apnea in my early fifties; had a TKR at age 72; viral meningitis at age 73; Idiopathic SFN at age 76; CHF with mitral annular calcification at age 81. I have been incontinent since sometime after the CHF and wondered if it was caused by the four cardioversions I had in the following months. I have been using Poise pads 24/7 since the first realization that I was incontinent and had absolutely no sense of an urgency; when I stood up I had a flood. I set an alarm for reminders to go to the bathroom because I still have no hint of having a full bladder. I asked my PCP for a referral to neurology several years ago but was discouraged when it was suggested that the place to start was with urology which seemed like a waste of time. I didn’t figure I had very long to live so I didn’t pursue any referrals.

About three plus years ago I started having severe pain, the worst pain I had ever experienced, in my ankles and wrists which I self identified as osteoarthritis,. At the same time my restless leg syndrome, RLS, was also getting worse. I had been taking medication for RLS for many years and my sleep specialist prescribed gabapentin. By the time the 300 mg dosage was reached all my pain was gone: RLS, ankles, and wrists. I began questioning whether the pain was osteoarthritis or neuropathy.

I started falling about three years ago; in December of 2022 I raised the balance issue & my PCP ordered a head c-t scan. The results showed severe cerebral stenosis. I was referred to neurology and received an appointment for seven months later. I asked the PCP about that date and received a call from a neurological surgeon who explained that the locations of the stenosis reflected redundancies and I should be aware of stroke symptoms and go to ER immediately if I have any symptoms, but it was not of immediate concern. The appointment was changed by neurology for two months later & I was referred for PT which was helpful. The neurologist offered to order an MRI and/or EMG should I choose to have them. I want them to assuage my curiosity, but because of my age, have not requested them. FYI - my mother was just short of 98 when she died. FYI 2: I have told my PCP that under certain circumstances I will pursue VSED, Voluntarily Stop Eating and Drinking; I also have a POLST form on file.

To each of you: have the best future possible.

Ray -
I’m guessing, like me, when you get a report you read it and have to stop & Google every other word to try to figure out what it’s saying and to get questions ready for our doctors. I haven’t read reports of mine recently. There are so many big words I no longer recall if they belong to me. Myelinating, demyelinating, generative, degenerative… It all becomes a swirl and I almost would have to re-read and re-Google all over again. The only key word I remember with certainty anymore is “Idiopathic “ 😵‍💫

However, when I moved here last year, I asked my new Neuro if she would compare my last two EMG’s to see if she saw any signs of Progression (or Regression). I wanted to know so I’d have a little more Dara and knowledge to help plan for the future ? She refused to compare them. She said that it wouldn’t change the fact that SHE couldn’t do anything about it, so it wasn’t worth the time for her to do it. I guess it didn’t matter that I felt that Knowledge of progressing would be Power for ME. We can argue that my body is telling me, but that’s not imperial & specific scientific PN data with all the other variables in our life that contribute to our wellbeing.

It made me wonder if maybe she didn’t know how to compare the two EMGs that were 2 years apart. Or maybe she really was the type that just selfishly thought my visit was about her, not me. So when you used the word progressive, it made me wonder about how to measure it. (In a vacuum of course, because it would be hard to isolate it from the normal wear & tear with aging, injuries, our other medical condition impacts and their progressiveness , etc)

Days are looking up, getting longer, more sunshine, and I don’t like dark. I hope you’re staying warm! Deb

😊😊😊. Amazing how spellcheck corrects my Neuropathy typing. “Ole” would have had a different connotation!! I hope you’re doing well and have been able to stick to your other good ole coaching of “Keep Moving”! Deb

@dbeshears1 Stick to it, I live by it. Oddly enough, the suggestion came from a neurologist that I saw early on perhaps back in 2015. He is a neuro surgeon in his early 70s', well know in my area and having lower back issues, I thought I needed something done. He said surgery on my back would not help with PN. Before I left his office, he leaned towards me and said can I give you one piece of advise. "Keep moving, don't stop walking". So, as Paul Harvey always said....now you know the rest of the story. Stay well. Ed