My hair is twisted under my scalp…it moves down my body coming out
My hair is twisted under my scalp I can move it so it goes down through my body sometimes it’s behind my eyes in my throat I gag get dizzy feel like I might die can anyone help me? Has anyone else ever had anything like this
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@donnasouthwick Thank you so much for putting this information in this discussion. I’m sure that many, including me, have really wondered about this. I would suggest that those with this condition, take a copy of this information to their next doctor’s appointment. I’ve this because I have a very unusual autoimmune disease, and most doctors just laugh and say, “Well now I’ve been educated!”
Try it, It can’t hurt!!!
Me too the tell I need to go to a mental dr I'm not crazy and it's not anxiety
I had this even before covid
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.
@marc9889 Welcome to Mayo Clinic Connect! I’m glad you found this site and decided to post. I hope you’ll read what others have said!
This is very interesting and seems so hopeful Thank you so much for telling me this!
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I'm glad to hear that at least part of it was inspiring. This has been so, so difficult for us, and I'm sure you can relate.
Oh, yes, I'm glad to see that there's some people out there that have this. I'm wondering if we are all share a similar time frame of around one to two years ago.
I'll share a few of my key observations and experiences.
1. Excruciating pain
Top middle of my head felt like somebody was stacking bricks in a circle and something was trying to drill in the middle of my sculp, at the same time coming right up my butt through the hole.
2. Location.
Traveled around the body until it locked in. But would settle and always go to the top of middle of my head and the hole in my butt.
3. Nobody could see it
4. Felt mechanical or intentional.
5. Weird sensations and tingling in my nervous system on it, some primary points and extra Tingly on smaller branches. It felt like someone was trying to communicate with me through my nervous system.
6. Small ball of clear, slow moving electricity that would linger on me for days.Cold and heavy felt like it was docking on my back. Water would splash off of it, like a shield, and not get me wet when I was taking a shower.
I do not believe the doctors know what this is. I believe they're stamping, it with their best guess with the closest classification that makes sense to a billable diagnosis.
I'd be interested to know if anybody had similar experiences.
"Billable diagnosis"... exactly.
+1 on the weird sensations on the central nervous system. That sounds like a virus, doesn't it?
+1 on the "nobody could see it". My derm "couldn't see anything", therefore, "mental illness".
Additionally, my hearing has been affected. If our dog barked, it was excruciating, as were most other loud sounds. I also had numbness in my tongue and feet, and my vision would mysteriously get blurry, then recover over the course of a week.
As I mentioned in my original comment, my wife and I both have it. There are only a few commonalities - 1) we both got the same covid vaccination on the same day, same place, and same manufacturer. 2) We both vaped at the time. 3) During the pandemic, we disinfected our hands with rubbing alcohol/water 50/50 mix.
Back to symptoms one more time, I have tinnitus now. It got really bad for a while, but has improved a lot. There are people who have ended their own lives due to tinnitus, and I can see why, but it was the least of my worries even at it's worst. Lastly, I have a strange coating on my tongue that comes and goes. I've been to my dentist looking for cause/solution, but he says everything looks remarkably good and has no clue what it is. The worse the tinnitus gets, the worse the coating gets and vise versa.