u/Sadsongs0930

I have not been able to get a firm diagnosis! I have an appointment with a neurologist next month to see if it’s nerve damage that’s causing my issue. I’ve had biopsies, blood tests, confirmed then rescinded a Lupus diagnosis, steroid injections, topical antibiotics and steroids- nothing is helping and I’m going crazy!

Here is the info I have about my condition. TLDR-
Chronic painful scalp lesions with a recurring cycle of inflammation, crusting, and breakdown; recurrent foot rash with blood vessel inflammation on biopsy; flu-like flares, joint pain, nail changes, and neuropathic pain that responds to gabapentin. Lupus and autoimmune vasculitis biopsies are negative. Looking for anyone with a similar constellation of symptoms or an eventual diagnosis.

This started around June 2024 with rashes on the tops of both feet. In October 2024 I developed painful scalp lesions. Since then I’ve had recurring flares involving my scalp, feet, joints, and what feels like my nervous system.

Symptoms:
• Extremely painful scalp lesions that start with deep burning, pressure, or nerve pain before anything is visible.
• Lesions often begin as a shiny white, tight area, then become inflamed and develop very deep, adherent scabs.
• The scabs become thick and hard, then eventually break down, ooze, and sometimes the skin underneath crumbles before healing.
• Recently, after steroid injections into the scalp, the inflammation has improved and these deep hard plugs/crusts have started surfacing and falling off on their own. They are hard, dark brown/black outside, chalky white inside, and sometimes contain small hairs.
• Hair loss around the lesions.
• Gabapentin almost completely relieved the burning nerve pain but didn’t stop the skin disease.

Feet:
• Recurrent rashes on the tops of both feet.
• Started as small red spots and were originally painless.
• Now they become itchy, burning, and painful during major flares.
• The rash can be felt with my fingertips, later turns purple/bruised, and lasts for weeks to months before fading.

Systemic symptoms during flares:
• Flu-like feeling (without respiratory symptoms)
• Severe fatigue
• Food tastes awful
• Achy thumb, elbow, and knee joints
• Skin becomes extremely sensitive, almost like a sunburn or chemical burn
• During one severe flare after walking 3-4 miles, my feet felt like they had chemical burns, my skin hurt under my arms and along my sides, my scalp flared badly, and my foot rashes blistered.
• Toenails become thin, peel, and sometimes look red underneath during flares.

Testing so far:
• Scalp biopsy was read as irritated seborrheic dermatitis with superficial lymphocytic inflammation. PAS stain negative for fungus.
• Foot biopsy with direct immunofluorescence was negative for lupus, autoimmune blistering disease, and antibody-mediated vasculitis.
• The dermatologist said the foot biopsy showed inflamed blood vessels causing the discoloration, and that the color could take a long time to fade.
• ANA was previously positive (>1:320), but repeat ANA by IFA is now negative.
Treatment:
• Steroid injections into the scalp have significantly reduced inflammation.
• As the scalp calms down, the foot rashes also seem to improve.
• Gabapentin dramatically improved the neuropathic scalp pain.

At this point I’m not necessarily looking for a diagnosis over Reddit, but I’m wondering if anyone has experienced a condition that connects:
Chronic inflammatory scalp disease
Neuropathic scalp pain
Recurrent inflammatory foot rashes with blood vessel inflammation
Flu-like flares
Joint pain
Nail changes

Has anyone had a similar experience or eventually been diagnosed with something that tied all of these together?