Living with Neuropathy - Welcome to the group

Hey Everyone, my name is Steve. I’m a 35 year old dad that works full time. I am hoping to get some advice as I am very confused given my test results. So here is the scoop. Three months ago I developed what appeared to be a small fiber neuropathy from what I think was a viral illness. It started as itching in my legs and morphed into painful paresthesias in hands and feet, shooting electrical pains in arms and legs, needle like pains legs and hands, and eventually burning feet. All the symptoms clinically point to SFN. It has been brutal-I took the pain without meds for about 2 months-then my feet felt like someone hit the with a sledge hammer. I started sobbing in the bed because the pain wouldn’t stop. It’s been the worst 3 months of my life. That being said-all my tests have come back negative and they have been extensive. Everything glucose related normal-vitamins normal-ANA normal-gluten normal, EMG normal, and whole bunch of other stuff. The only one that was indicative and neuropathy tilt table test-showing autonomic neuropathy. I finally pushed to have a skin biopsy done to confirm SFN. I was 95% sure it would show SFN-it was normal! Not sure how I feel about all of it given I still have the symptoms and they are tough to live with. Anyone have any advice for this situation? One neurologist is ready to peg me with the “idiopathic” label which sucks. The other believes it may be autoimmune. Anyone had their skin biopsy come back negative even though they have all the symptoms? Thoughts? Thank you!

Maybe there's an underlying condition? I always pooh poohed my prediabetes label because my A1C was close to normal but I was overweight most of my adult life and didn't get enough exercise. It's only been the past few years that I've made some changes to eat and live a healthier lifestyle. I've been reading up on metabolic syndrome which can cause lead to a lot of different diagnoses and recently read an article from 2016 that may be what's going on with my idiopathic small fiber PN diagnosis.

"Is small fiber neuropathy fatal? — When those deposits build up, peripheral nerves start to malfunction, and the patient experiences peripheral neuropathy. The disease eventually involves sensory, motor and autonomic nerves, and it is fatal.” — The Fire Within – Johns Hopkins Medicine: https://www.hopkinsmedicine.org/news/publications/hopkins_medicine_magazine/features/fall-2016/the-fire-within

Metabolic Syndrome | NHLBI, NIH: https://www.nhlbi.nih.gov/health-topics/metabolic-syndrome

Hi John, I read the 2016 article and saw myself in that prediabetes scenario. I wonder if there has been any followup to that research? Certainly, it would have gotten a lot of attention by now if it had any merit?

No-pain neuropathy with lightheadedness. Numb feet to ankles. Has anyone experienced this, discovered causes for the lightheadedness, and found treatment for the same? My spouse suffers from this. He has been to a primary care doctor, neurologist, cardiologist, physical therapist, ENT doctor, and podiatrist with no explanations. They ruled out inner ear problems and vertigo. He does not have diabetes, and his blood pressure is stable. The physical therapist suggested that the lightheadedness could be due to imbalance caused by neuropathy. However, he has experienced lightheadedness when sitting in his recliner. He was waking up with cramps but taking calcium and magnesium and an extra magnesium tablet before bedtime, alleviates the cramps. He exercises at the YMCA and walks at the Mall, using a cane for balance. This condition has caused anxiety and depression. He has stopped driving on the freeway because he doesn't want to put anyone at risk.

I suggested a teaching hospital to my husband, and he was not open to it because he has seen so many doctors. I am referring your response to him with hopes he will give it some consideration. Thank you for responding quickly.

I suggested a teaching hospital to my husband, and he was not open to it because he has seen so many doctors. I am referring your response to him with hopes he will give it some consideration. Thank you for responding quickly.

No-pain neuropathy with lightheadedness. Numb feet to ankles. Has anyone experienced this, discovered causes for the lightheadedness, and found treatment for the same? My spouse suffers from this. He has been to a primary care doctor, neurologist, cardiologist, physical therapist, ENT doctor, and podiatrist with no explanations. They ruled out inner ear problems and vertigo. He does not have diabetes, and his blood pressure is stable. The physical therapist suggested that the lightheadedness could be due to imbalance caused by neuropathy. However, he has experienced lightheadedness when sitting in his recliner. He was waking up with cramps but taking calcium and magnesium and an extra magnesium tablet before bedtime, alleviates the cramps. He exercises at the YMCA and walks at the Mall, using a cane for balance. This condition has caused anxiety and depression. He has stopped driving on the freeway because he doesn't want to put anyone at risk.

Vertigo seems to be a common plight among former military.