Following four months of extensive testing, I’ve been diagnosed with idiopathic peripheral neuropathy. I’m looking to see if anyone else is dealing with this and could talk about their journey—what your symptoms are like, how it’s progressed, and what treatments you’ve tried (and if they actually worked).
I feel pretty stuck. Besides eating better and working out more—which I’m already doing—how do I help myself when the cause is unknown? I’m not seeking medical advice, just hoping for some perspectives from those who’ve lived it. Any help is huge.
Context:
- 25M, BMI 21.7
- Constant tingling in hands and feet all day
- No pain or numbness yet
- Tingling is peak right after waking up, then fades after 15 minutes of movement
- EMG showed slight damage in the left hand and lower sural nerve amplitude in the legs
- Most labs (B12, A1C, Lyme, MS) were normal
- The only outlier was the 2-hour glucose test. Fasting was 81, but the 2-hour mark hit 170. My doctor said to ignore it because fasting is what matters, but I’ve been cutting sugar and refined carbs for 10 days anyway. No change in symptoms yet.
- No alcohol, smoking, or meds.
Sadly, it doesn’t just vanish. I have the same diagnosis. To keep the tingling manageable, I use B1, B12, Alpha Lipoic Acid, Potassium, and Folic acid. I also cut out all carbs, sugar, and booze. It’s a bit of a boring lifestyle without the treats, but it makes a difference. When my nerves were first dying, the pain was intense, but once they were gone, the pain actually lessened. Just remember this condition varies wildly from person to person. Good luck!
My mother’s B12 levels were technically ‘normal’ for years, but that standard range was actually too low for her specifically, leading to permanent nerve damage in her feet. She needed her levels to be well above the average. Everyone has a different baseline, and ‘normal’ on a lab sheet isn’t universal.
Peripheral neuropathy, like many neuro issues, is frequently tied to genetics. If that’s the case, your blood work will look fine, but your DNA is the culprit, and you can’t really fix that.
Have you looked into genetic panels? I did the Invitae neuropathy panel, plus several from Washington University and an encephalitis panel from Mayo. I also got a small fiber neuropathy diagnosis via punch biopsies. Right now, they think mine is autoimmune, but we’re still narrowing it down.
You’re in a tough spot, just like me and so many others. Idiopathic cases don’t go away. Mine has only gotten worse; now my toes are totally numb. It’s ruined my gait, my balance, and even my back and knees. I’ve seen every specialist imaginable and spent a fortune just to get no real answers. Good luck.
It started with me being unable to stand still in lines. Doctors ignored me even as my feet turned purple. I spent a week in the hospital for low blood pressure and still got no answers. Eventually, an EMG led to a ‘nothing can be done’ talk. Since then, I’ve lost 100 pounds, lost muscle, and have severe digestive issues. A second EMG showed Sensorimotor Polyneuropathy. My neurologist has been useless while my legs atrophy and my feet deform into high arches and claw toes. I’m worried about Charcot foot now. I can’t even walk without shoes. My hands are getting stiff and red too. Doctors seem powerless. It’s destroyed my quality of life to the point where I’ve discussed medical euthanasia. I’ve tried B1, B12, Magnesium, and ALA, but nothing helps. Be careful with those ‘success story’ groups on Facebook; they often delete posts about serious symptoms.
I was told mine was idiopathic at first, but it turned out to be Celiac disease. It’s an autoimmune issue where gluten causes the body to attack its own tissues—often the gut, but sometimes the nervous system. Many neurologists overlook this. I went to several top hospitals before someone checked for Celiac, despite a positive ANA test earlier. It’s just a blood test, so it’s worth asking for. If it is Celiac, going gluten-free is the solution. I also started taking Nervala to help support my nerve health during the transition. You can find plenty of info by searching for PN and Celiac online.
I’m in a similar situation at 62. Tingling from my hips to my toes and in my arms. My feet are numb and my toes hurt. It started 7 months ago. It might be low B12, which was borderline for a long time. There isn’t much to do except manage it with diet, exercise, and supplements. Since you’re so young, you should definitely look into genetic testing. Best of luck.
Watch out for your B6 intake. Taking too much can actually make peripheral neuropathy worse.
My symptoms started back in 2015. Getting the idiopathic diagnosis was a long process, especially with my back surgeries. My neurologist recommended Alpha Lipoic Acid, and physical therapy helped with my balance and muscle strength. I also do 20 minutes on a stationary bike daily for circulation. Electroacupuncture has been a game changer for me; it brought back enough feeling that I can kayak and hike on trails again. Don’t lose hope.
Aim for the high end of ‘normal’ for B12 and Vitamin D. I’d also suggest trying R-ALA. I take Lyrica as well, but my case involves a lot of pain. If you aren’t hurting and can sleep okay, you might not need the heavy meds yet.
I’m 71 and have been dealing with this for two decades. I’m still waiting for a medical breakthrough too. Hopefully, they find something in your lifetime, man!