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PN: From Anger to Acceptance

Neuropathy | Last Active: Aug 3 9:51pm | Replies (83)

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@jobli0

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.

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Replies to "Why Me? Why NOT Me? I am female and probably quite a bit older than the..."

My bladder problems were due to small fiber neuropathy. I have the exact same symptoms. I learned that I go to the bathroom every hour whether I need to or not. It has also affected my heart. I have bradycardia/ tachycardia and having a hard time managing my blood pressure (called CAN cardiac autonomic neuropathy) along with gastroparesis (slow digestion). I can go for days without eating. Normally my husband is good about asking me when the last time I ate.

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.