Hey everyone, I'm hoping someone here has experience with what I'm dealing with or can point me in a direction I haven't considered yet.
I'm 33, generally healthy (5'10", 155 lbs, 15% body fat, no major medical history). Started having bilateral foot arch pain at 16 as a high school distance runner. It's slowly progressed over 17 years and now includes chronic tightness/fatigue and tingling sensations in my calves/feet
What I've ruled out so far:
Multiple specialists across podiatry, orthopedics (twice), vascular (with ultrasound and CT angiography), neurology (twice with MRI of brain/cervical/lumbar plus EMG), spinal surgery (epidural injection produced no relief), rheumatology (twice), and physical therapy (12+ months, zero improvement). Comprehensive blood panels through Quest including paraneoplastic antibodies, ANA, RF, ANCA, celiac, thyroid, B12, MMA, copper, ACE, ganglioside antibodies, monoclonal proteins, HIV/Hep, Lyme, vitamin levels — all clean or unremarkable. CK normal.
Where I'm at now:
NYU neuromuscular has scheduled a skin punch biopsy for 5/14 to evaluate for small fiber neuropathy. Mayo Clinic extended autoimmune antibody panel being run same day. I'm pushing for TS-HDS and FGFR3 antibody testing through Washington University's lab. Have a backup neuromuscular specialist appointment in July with someone willing to treat with IVIG if the diagnosis supports it.
My questions:
Has anyone else had this combination of symptoms (sensory + autonomic + inflammatory) end up being something specific I might not be considering? Has anyone gone through the autoimmune SFN diagnostic process and have advice on what to push for? Anyone successfully treated with IVIG for this kind of presentation? Any specialists or institutions worth contacting for a second opinion?
Open to any input, theories, or leads. I've been at this for 17 years and I'm trying to leave no stone unturned.
Thanks.