Hi everyone,
It looks like I found another group of my people. I say "my people" because I have this same condition and so does my wife. I characterize mine as follows. Imagine a half dozen or so hairs that are twisted into a rope-like structure, then some type of biological thread is wrapping those hairs into a bundle and pulling them down onto my scalp. Once on my scalp, my skin grows over the top, leaving "nodules" as the ER doctor called them under the skin. He said my neck was affected, and clearly my scalp was too, or he wouldn't have seen the nodules in the CT scan.
I wasted some time at a derm's office, and got called "mentally ill" for the symptoms I described. So I went home, shaved my head, and went back to the same derm's office. The head honcho dermatologist walked in, pointed to my head and said "that's psoriasis". This was very surprising to me, as there was no red color anywhere, just inflamed skin growing over my hair follicles/shafts. As derms often do, he gave me a prescription for clobetisol and sent me on my way. I knew this was akin to treating a 3rd degree burn with chapstick, so I made an appointment with a Rheumatologist at Vanderbilt University Medical Center. I turs out that it was my first step toward getting better.
So the Rheumatologist went through his normal list, and after our conversation and some blood work, he put me on methotrexate. Fast forward one year, and my condition was significantly improved. I discussed the improvements with my rheumatologist, and he decided that it was time to try a biologic. Within a couple of days, a Skyrizi injection arrived, and I promptly injected the med into my leg. A couple of months later, it was time for injection #2, and into my leg it went.
As of today, my condition has significantly improved. The scalp and neck issues are annoying, but no longer an emergency or profoundly concerning. And remember when I said my wife has the same condition? Well she's been on methotrexate for 6 months, and her progress mirrors mine. She hasn't started Skyrizi yet, but her improvement mirrors mine when I had been on methotrexate for 6 months.
So what you have is an autoimmune disease. Is it really psoriasis? I have my doubts. It doesn't look like psoriasis (photos I've seen online), but the derm is convinced that's what it is, and it's responding well to immunosuppressants. Whether it's psoriasis or not, it's responding to immunosuppressants.
Now let's apply all this info to the conditions you've described. You've tried everything, right? (Me too.) All the shampoos, oils, conditioners, bath salts, Nizoral, and let me guess - it helped for a few days, then stopped helping. Well that's because your body adjusted to what it was doing. Your body "thinks" it's doing what it's supposed to do, that's why it's overcoming the effects of everything you throw at it. How about non-scalp symptoms? Do the bottoms of your feet sting? Mine too. Do you have random "pin stick" sensations? Yep, me too. I have a list of 20+ more if anyone wants to discuss it.
I know how miserable this is, and I'm sorry a) that you are going through it, and b) there seems to be no obvious cause, or even an obvious diagnosis. What I do know is that if you have what I have (and it sounds like you do), you may as well skip all the derms and GPs, and head to a rheumatologist. Something out there has flared your/our immune system, and immunosuppressants / immunoregulators are the only thing that will help.