PN: From Anger to Acceptance

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.

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.

About the time I posted the Feb 18th comment, I realized I was seeing blood in the toilet. By the time I had a colonoscopy on May 28, 2024, I assumed I had cancer, which was confirmed. I was, by the end of May, losing more blood, went to ER and was admitted to the hospital because of severe anemia, and within a week I was released from the hospital to hospice at my daughter's home. To make a long story short, my colon bleeding stopped after I received three units of blood; my hemoglobin went up and I am currently doing fine, at home, with no pain. I HOPE that I will live long enough to vote in the November election, but I know my time is short. I still say, "Why NOT me?" Life may be short or long and we can only do our best to try to make a better world for those who follow us with the time we have. I started a
new thread regarding choosing palliative care rather than cancer treating, if you are interested.

Hi Ray. I had extremely mild neuropathy to begin with. I did an expensive and time-consuming treatment with supplements, red light therapy, and a TENS unit. It completely held it in check. Then a year ago I was visited by polymyalgia rheumatic, which rendered my shoulders not only painful but useless. I spent almost 11 months on prednisone and my PN took off, full wild fire, not only in my legs and feet and hands but all over my body. I'm now off prednisone but my feet have suffered some real damage and I accept that they may not get better. I'm back on the red light therapy and trying every snake oil on social media to keep the PN contained. That's what I hope for, that I may be able to contain it. Swimming helps a lot for both my mood and my body. I am happier if I accept that this is my aging journey. I'm no Pollyanna but resistance just stresses me more. Best of luck to you, Jill