Biopsy soon, tell me everything!
Biopsy in two weeks.. what should I be asking? What do you wish you knew when first navigating diagnosis? I’m not even sure what’s going on yet, but I’ve been passed specialist to specialist like a pin ball game for years and finally landed on small fiber neuropathy and am scheduled for a biopsy in a couple weeks.
Backstory/History: My issues started 8yrs ago. The blankets started to severely hurt my toes. I switched to a light weight fleece and that helped. Then I’d get the same pain in my heels from touching the bed too long. I’ve gotten creative with pillows so I can manage to sleep but still wake up nightly because of it. Then came the random tingling and feeling of something being stuck on the bottom of my foot. Like a sticker or something but nothing was there. I also started randomly getting a feeling like my calf was being gently touched as time went on. The tingles have gone from my toes to now up to just below my knees. Worse at night or rest, but felt in varying intensity all the time. I’ve seen multiple PCM’s, podiatry, two neurologists, a rheumatologist, and had PT 3 times. Nothing helped. I had two NCS/EMG’s 2yrs apart that were normal. MRI’s ruled out MS. Extensive labs ruled out various causes.. Leg ultrasound for vascular causes was normal. It’s been a journey and now I finally have a Rheumatologist and a Neuro Dr who both think SFN. I am cautiously hopeful for an answer but also don’t know anything about SFN or how to proceed. My drs both didn’t have much to say about it other than it’s something they test for last. Rheumatologist think I may have inflammatory arthritis too but says that is unrelated to my leg and feet tingling.
Any advice? Words of wisdom?