Patient Comments: Peripheral Neuropathy - Experience

Please describe your experience with peripheral neuropathy.

Comment from: Joey, 35-44 Male (Patient) Published: November 25

One of the most frustrating problems I have with bilateral neuropathy is explaining the pain to non-sufferers. It is constant. My feet feel like they are wrapped in tin foil that is on fire. Always. I take 2400 mg of gabapentin and 15 mg of Vicodin. Even with the medication, the pain is constant and negatively affects my quality of life. Sleep is difficult. Wearing certain shoes (flip flops) are impossible. Driving is hard because my foot often hits the gas while I'm trying to brake. It is awful, yet nobody really understands it; family, friends and (oddly enough) especially doctors.

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Comment from: Dewberry, 65-74 Male (Patient) Published: September 03

It started with numbness and tingling in my legs and feet (left side worse). Walking was difficult because my balance was affected. I had EMG and MRI in January and was diagnosed with idiopathic neuropathy, although I believe polio as a child may have contributed, or thyroid imbalances in the last 30 years. I have been receiving Immunoglobulin therapy. I just had my 3rd session (5 days each session every 2 months). Side effects are mouth infections, hypertension, migraine type headache, sickness and vomiting, which last 3 days post infusion. Neurologist doesn't believe physiotherapy will be useful.

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Comment from: yoshi g, 45-54 Female (Patient) Published: July 14

I have been suffering peripheral neuropathy for over ten years and it took me about four years to be diagnosed. My doctors made me feel it was in my head but once I was seen by a consultant they diagnosed me. The first couple of years it affected my hands and feet, then over the years my legs, my bladder, and bowel. I had strange pains and spasms. I rely on my partner and now full time caregiver for everything. I feel I have lost any independence I ever had and wish there was a cure or at least more understanding about this condition. Every day I wake up after a terrible night's sleep and have constant pain and wonder if it will ever stop, but it doesn't. When I have really bad months and new symptoms I have to go to new doctors and feel I am getting nowhere and makes me more depressed. I have been on different medicines over the years but not a lot helps. It has changed my life forever. I used to work all my life and now am made to feel bad and a burden on everyone and the state. I think people outside don't know or care about how distressing this illness is. I hope one day they will be able to help all people with neuropathy as they don't do enough for the sufferers out there.

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Comment from: Mark, 55-64 Male (Patient) Published: May 20

I've had peripheral neuropathy (PN) since the late 90s. My first back surgery was in 96 and I had a L3 L4 herniated disc. Then 6 months later I had a more major cleanup of the same area. Shortly after that I started having numbness in my toes. I have seen a neurologist since about 2003, have been prescribed everything at one point or another. I had a fusion L3 L5 and throughout all this it only got worse. I spent 3 days at the clinic and all they could say was I must have inherited it from my grandmother (she had it but don't know why); she passed away before I had symptoms. I'm extremely numb from my knees down through my toes. I take 7200 mg of Neurontin and it only helps about half the pain. I've since had 2 fusions at the cervical level and now my right side is numb and my right hand is very painful like my feet. My story is long (sorry) and I have no hope of getting better. I take B12 shots every month, do not have diabetes, somewhat overweight (6 ft. 4 in. and 280 lb.), have trouble walking and exercising is difficult at best. I'm looking for a new doctor since my current one is out of ideas how to help me.

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Comment from: Billybob, 75 or over Male (Patient) Published: April 07

I have had idiopathic neuropathy for over 20 years. Several chiropractors, neurologists and podiatrists later I have no change. The podiatrist did suggest PoDiaPN. After taking two pills a day I immediately discovered that I no longer had leg cramps whereas I had up 10 or 15 each night. Doesn't seem like this could have been placebo effect since I was sleeping. Although I basically have no pain, ever hour or so I had pin and needle attaches that last only a few seconds. That symptom disappeared after the PoDiaPN.

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Comment from: evergreen1946, 65-74 Female (Patient) Published: December 30

I started having pain in my right and left elbows. Later the pain started on the top of my right shoulder and down my right arm, mainly around the elbow area. Then about two or three days later my index and thumb started to get a little numb. I started to use Flagyl for a female problem and I don't know if that caused it or not. I read that one cause of this was the use of Flagyl.

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