Rapidly progressive NLD SFN. ~80% of body in 6 months. Anyone similar?
I’m looking for anyone with a similar pattern of rapidly progressive NLD-SFN. I’m in my 30s with hEDS and MCAS.
Mine doesn’t flare or come and go — it has been constantly progressive. In ~6 months, it has spread to roughly 80% of my body. I haven’t been able to find many patient stories or studies describing progression this fast.
It started asymmetrically in my face and mouth with paresthesias and then traveled downward. Over time, the tingling became primarily numbness/sensory loss.
I now have:
• Widespread numbness
• Reduced pinprick/sharp and temperature sensation
• Reduced/absent sweating in affected areas, with overheating and compensatory sweating elsewhere
• Increasing burning neuropathic pain despite multiple pain meds
I’ve had an extensive workup and seen multiple specialists. A major neuromuscular center recommended skin biopsy for SFN and lip biopsy for possible seronegative Sjögren’s, but I’m scheduled out quite a bit. My PCP has also ordered whole-genome/exome/RNA sequencing to look for potential genetic contributors.
From what I’ve been able to read, the non-length-dependent, facial-onset pattern can occur with immune/inflammatory causes and possibly small-fiber sensory ganglionopathy/neuronopathy. I’m especially interested in finding people who had SFN progress this quickly?
For anyone with similar NLD-SFN:
• How quickly did yours spread?
• Did it eventually involve most/all of your body, and did it stop progressing?
• If you had a skin biopsy, was it positive despite the non-length-dependent pattern?
• Did anything slow the progression or restore sensation/small-fiber function?
• What has actually helped the burning pain?
• How has this affected your quality of life or any surgeries you’ve needed?
Mostly, I just want to find other people whose SFN behaved like this and learn what happened over time.