Boggy Scalp, Scar, Change In Texture And Health. Is It Lipidemous Alopecia?

I am almost certain that I have lipidemous alopecia . I know its rare, but every bizzare symptom fits; Areas of hair that will not grow past a few centimeters, initially boggy scalp at the crown, that went away leaving what felt like a huge scar it its place. EXTREME change in texture and health of my hair. It very much fits the wooley discription of this disease. I also remember the strange sensation of tightening, pulling and mild itching in my scalp as it spread from the top down over several months time. I am in constant pain. Water on the scalp and hair is the only thing that gives relief. Oils do not help at all. My doctors have no answers and a punch biopsy revealed no fungal infection . My scalp looks unremarkable, I know because I was in so much pain I shaved it. Out of vanity I let it grow back, but bald is better because hair with little oil is matted and painful. I also have swollen lyph nodes on the back of my neck at all times. Antibiotics reduce them when they flare. Blood tests reveal nothing. I am otherwise healthy except for very high tryglycerides than I have since reduced from 450 to 250. What can I do? There is no cure. I don t have the money to get the CT scan that proves this condition, and if anything this thickness has decreased but all the other symptoms remain.