My hair is twisted under my scalp…it moves down my body coming out

Which doctors have you talked to about this? If you feel like "I might die" then you should get to an ER or Urgent Care. There is a lot of research on ingrown hairs, but those generally only move a tiny distance; one name is pseudofolliculitis barbae. Is this a condition that you have had for a long time, or did something trigger it, such as a stressful event, bacterial/viral infection, or other? https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6585396/

I’ve seen my primary care doctor who referred me to a dermatologist who diagnosed alopecia scalp biopsies were normal tests for lupus negative hair follicles healthy hair grows but it hurts under scalp like it is twisted under there. I’ve been referred to a pain specialist a neurologist other dermatologists who specialize in hair growth. I’ve had an mri showing problems with c3 and c4 so I’m seeing a physical therapist for that…I’ve been dealing with this for two years with no real help or answers.

I'm not a medical doctor, but hopefully some on this site have similar symptoms to yours. Good that you are in PT; if it is associated with neuromuscular or neurologic changes that can help. Almost all the dermatologists that I have gone to over the decades have diagnosed me with "its just dry skin" with what turned out to be celiac-associated rashes. Diagnoses can take a painfully long time. Have to seen the pain specialist and neurologist and have they given you any info? I don't know if you are in an area close to a Mayo Clinic or similar teaching hospital, but consider ramping up the investigation. Unfortunately we have to be our own detectives sometimes, documenting everything, seeing what affects our symptoms (for me, stress and gluten), and trying to find answers.

@mimi44 what is c3 and c4?

Discs in upper spine…maybe I’m not saying it right? I think that’s what they called them….like in my neck

That usually refers to the c3 and c4 vertebrae. https://my.clevelandclinic.org/health/articles/22278-cervical-spine

Yes I said wrong c number!…sorry

@mimi44 if it’s about your neck, I think you got the C numbers correct, according to the informative article @kayabbott shared.

I thought I was losing my mind especially after trying to explain this to different types of doctors for over a year with no answers. Everything you wrote I suffer from, do you know what's causing this or have any answers related to this condition?

I’m so sorry you are also experiencing this! I am not getting any help or answers still!