I am done searching for answers of doctors
Hi everyone,
I’ve been dealing with persistent symptoms for over a year and still don’t have a clear diagnosis. I’d really appreciate any thoughts or similar experiences, I am done talking to doctors.
My main symptoms:
• Severe fatigue (not recovering even after sleep, fluctuates, mostly worse after exertion, but didn’t found a REAL trigger)
• Dry mouth and dry eyes (mouth not constantly severe, just after speaking and eating worse)
• Cold hands and feet (even in warm environments)
• Reduced pain sensitivity
• General feeling of dysregulation, almost stopped sweating
Findings so far:
• Skin biopsy: borderline reduced intraepidermal nerve fiber density → clinically interpreted as possible small fiber neuropathy (SFN)
• Lip biopsy: inconclusive, slightly under FS of 1
• Blood work: completely normal (including immunological panel), except slightly elevated IgG4
• Early Sjögren’s panel: negative
• No clear autoimmune markers
Doctors said also that my eyes don’t seem to be inflamed. OSS is without findings, Schirmer Test 0/5mm though.
Neurological findings:
• Skin biopsy: confirmed small fiber neuropathy (borderline intraepidermal nerve fiber density)
• Sensory testing: asymmetric sensory neuropathy affecting both small and large fibers
• Sudomotor testing:
• Regional autonomic dysfunction (not uniform)
• Areas of reduced sweating + areas of compensatory overactivity
• Pattern suggests neurogenic dysregulation, not simple gland failure
• Tilt table test:
No strong subjective symptoms, BUT objective findings: • Delayed orthostatic hypotension (significant BP drop) • Reduced heart rate variability • Impaired baroreflex sensitivity • Paradoxical norepinephrine response (higher lying than standing)
Overall consistent with sympathetic autonomic dysfunction
Rheumatology: • Multiple specialists consider a classical autoimmune disease (especially Sjögren’s) unlikely • They are also emphasized being very cautious with overinterpreting histological findings
Other observations: • I basically never get sick anymore (no colds, flu, sore throat for a long time) • Symptoms fluctuate but overall trend feels worse over the years • Dryness sometimes improves when eating/drinking/talking
My questions:
• Has anyone had similar symptoms with normal labs but borderline SFN?
• Can dysautonomia cause dry mouth/eyes and cold extremities like this?
• Does this sound more like Long COVID / ME/CFS than autoimmune disease?
• Any suggestions for further testing or treatment approaches?
Thanks a lot for any input 🙏