Please describe your experience with neuropathy. Submit Your Comment

Comment from: Aims, 35-44 Female (Patient) Published: December 18

I have conversion disorder with foreign accent syndrome. A month later I started becoming paralyzed. I now live with daily full body dysfunction, severe neuropathy pain in my ankles, feet and below the knee. It burns like it’s on fire, tingles, and to be touched is horrendous. Due to my inability to walk properly, my back is out, I have left sciatica pain, chronic hip, upper back, jaw and migraine pain behind my left eye. I’m on analgesic with no effect, awaiting neurological review.

Comment from: Gordon, 75 or over Male (Patient) Published: March 08

I had surgery for torn Achilles last year and had a cast on my leg for 3 months. After removing the cast I had blood tests which indicated diabetes. Over the past 12 months my feet have become very sensitive to the touch and I have now been diagnosed with neuropathy. I am waiting to visit my doctor to determine the best course of action. I have reduced weight by 20 pounds and my A1C is much better, along with daily glucose testing which shows readings around 120 consistently each morning.

Comment from: Magwolf, 55-64 Male (Patient) Published: November 21

I had a benign tumor located inside my spinal cord at C6 C7. It was 2.5 cm long and was pressing on the spinal cord from the inside. That puppy had to come out. I discovered I had neuropathy when I woke up in intensive care and could not feel my feet but I could move them. This was 4 years ago. I experience both chronic pain and numbness from my nipples to my toes. Thank god it spared my arms. Two years later I had spinal cord fusion about 1.5 years after my tumor. It was a 2 day surgery involving a C6 laminectomy, C3-7 bone fusion, and tethered spinal cord issues. The 1st fusion failed and I had a second fusion done about 3 months later. I have to take the highest dosage of Lyrica and Cymbalta. I also have a pain pump installed in my abdomen pumping Prialta directly to my spinal cord. Unfortunately this still does not work after it has been running for 1.5 years. You have to find the right dosage before it will work. Otherwise I have to take high levels on opiates because my body is very tolerant of any and all painkillers. I am not addicted to anything, but my body can eat methadone and Dilaudid like it was candy. I was prescribed buprenorphine for the last year but had to stop last month because I am having left knee replacement in about 2 weeks.

Comment from: Bobbi, 75 or over Female (Patient) Published: November 10

I was diagnosed with myelofibrosis in January of 2017. I started chemotherapy in September. Since then I have an unsteady gait, drop things, but worst of all is the pain and numbness in my feet and legs. The neuropathy is not constant, but at night is keeps me up. I am taking gabapentin but am not sure how much good it is doing. This did not start until my second round of chemotherapy. I am worried what will happen when I start the third round. I am afraid to walk unassisted as I don't want to fall. That makes doing anything very difficult.

Comment from: creamer, 65-74 Female (Patient) Published: August 01

I came down with Guillain–Barré syndrome (GBS) overnight and was diagnosed that day. I spent 10 days in intensive care, followed by about three months of intense recovery. A year later I was 85 percent back to where I had been. Now, 2 1/2 years later I have neuropathy. Out of the blue. No one can seem to pinpoint the cause or recommend a useful course of treatment. I walk like a penguin and am in constant pain. I am not diabetic and the myriad other tests have not helped.

Comment from: Autumn leaf., 75 or over Female (Patient) Published: April 19

I was first diagnosed with peripheral neuropathy, then poly-peripheral neuropathy, because I have trigeminal neuralgia. Now my legs, hands, head, ears, and face are affected and I experience terrible vertigo and digestive disorders. My neurologist says there is nothing he can do but treat me with Lyrica, Tramal and Nexium. I am on a very carefully worked out diet to avoid overweight and digestive upsets. I sleep badly, my days are sometimes good others so-so, and some are dreadful. I feel ignored by family and former friends who don’t understand, and I'm nearly 74. My life has closed most doors to me.

Comment from: desertgirl, 55-64 Female (Patient) Published: December 07

I am experiencing excruciating loss of hearing, and brain fog. My specialist indicates I have neuropathy. I feel as though my mind is in slow motion and isn't getting the message signals transmitted. My specialist indicates medication. Very frustrating to work at my full potential.


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