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

I will do a general reply to all of this, as I suffer from the same issues. I do have some definitive diagnoses; but, the ultimate one you all and I am looking for, I am sorry to say, I don't have. I am hopeful that I am getting closer. But, to quickly answer your question about tick bites...that was one of my first thoughts. I have been bit many times over the years considering I have spent much of my childhood outdoors and in the woods. Therefore, I did have my PCP check me for Lyme Disease and it was negative.

To all of you that have posted, I want to say "Thank You"! I hate you all are suffering; but, I am glad to know I am not alone. I suffer from the same issues... all of the ones posted here. I do have some definitive diagnoses; but, the ultimate one you all and I am looking for, I am sorry to say, I don't have. I am hopeful that I am getting closer. However, I DO HOPE my feedback and insight on what I have been through and what I do know will be helpful.
1) I have seen and talked to many doctors about this and no one so far has been able to help or diagnose me. Most recently, I have seen 4 dermatologists, with no resolution, 3 which advised me to see a psychiatrist and told me ot was all stress, mentally related, dillusions, and/or somatic symptoms. When I told them I already see both a psychiatrist and therapist, 2 proceeded to want to talk to them, advised me to get a different one and one that was an MD with more experience with better qualifications to handle "my complex condition", and one even suggested electoconvulsive therapy and another dismissed me from the prwctice all together. None-the-less, though not any of my doctors have been able to "see" all of my issues/concerns, I do have a PCP that listens and works with me and great neurologists who will at least listen and help where they can within their scope of practice. I have seen
Rheumatologist with no definitive diagnosis, no need for follow-up, etc. Labs only showed 1 rheumotolgy abnormality: (+) spotted pattern. Was told that was not enough for a diagnosis of any kind. S/S: hairs "traveling" through my body that come out at random areas (arms, hands, torso, butt, legs, feet, toes), hairs linking together in a pattern and/or what I refer to as "stitching my skin together". I believe someone posted on here something similar happening to them or how the skin grows together and/or over the hair...yes, all of the above is happening. The hair that continues to grow beneath the skin and traveling becomes long and intertwined with other body hair, especially in the folds of the skin such as the groin, rectum, vaginal areas, ears, nose, etc. For me, this has caused my ear lobes to become attached or closely attached to my face/neck, multiple skin folds in the vaginal area and perianal area, hyperplasia of epithelial cells (excessive skin growth) in various areas. It also has caused what appears to be hemmorids to doctors and what I assumed for years since having given birth. Unknowingly, this condition appears to have been going on for years, likely since puberty or even being congenital (from birth) based on my current discoveries & symptoms. It appears to have started at the crown of my head, involving both parietal/temporal scalp areas and the frontal area near the sagital (?) gyrus (looking at brain anatomy) and traveling down to the cocyx/rectum/anus. Although, my face, legs, feet, arms, and hands are all affected by the condition now. I do have long hair and have most of my life. I am 47 yrs old now, symptoms may have started in my teens (around 15 yrs old) as IBS but definitely in my early 20's as Vulvadynia. Over the years, I have been diagnosed with Vulvadynia (dermatitis/inflammation of the vulva), which is severe pain with no known cause, especially during/after intercourse. My post is getting long, I will mention my definitive diagnoses which have resulted (I believe) from this condition as they many of your s/s are or leading to these diagnoses, you just haven't been diagnosed yet. I can mention what diagnoses I have found in my research.
My confirmed diagnoses: Vulvadynia; IBS-MIXED; flare-ups of colitis (being tested soon for definitive Microlymphocytic Colitis which I have been dx with before as an acute attack; various types of acne, roscea, nodules, neoplasm of unknown type; multiple cysts (Ovarian, breast's, armpits, etc) and ulcerative skin cells with multiple layers via biopsy (basically an epithelial cyst formed by these twisting and intertwining hairs); Trigeminal Neuralgia (that tingling sensation and/or pain you feel in your ears, nose, mouth...like a hair is tickling you). If it is tingling now, as time goes by, it will likely progress into severe, sharp sudden pains like bolts of lightning. Raynauds Syndrome/Phenomenon due to keratin build up, excessive skin growth, and poor circulation. Tingling (neuropathy) of hands and feet. Pain in joints, shins, legs. Weakness in extremities. Epilepsy... 2 grand-mal seizures. Geographic tongue (that is what you are likely describing in regards to that film. It can progress and become painful. I have had it since I was in my 20's. Until this past month, I didn't know a reason, cause..I knew chocolate, citrus, etc would increase the inflammation. Removing the travelled hairs and dead skin cells in the chin, lips, and possibly nose, oh, and the cheeks will help this. Same thing with that film you feel on your teeth.
Most recent, I had my PCP check my Vit-C levels, I was deficient. I don't know how long I have been deficient, if this caused the condition...if so, Scurvy would be the diagnosis. I have not found any doctors who know anything about it though. Or...is the condition causing a malabsorption issue leading to Vit-C deficiency??? The hair condition is likely Piti Torti of the scalp...which can be congenital or acquired and can be related to various Syndromes/Conditions. One in particular I am looking into is Sjrogens. For a definitive diagnosis, the Rheumatologist says I have to get a lip biopsy. Good luck to you all and if you have questions or more feedback for me, please reach out. I DO HOPE to find answers and maybe do a research study. My youngest daughter is also presenting with early s/s. ❤️🙏

Hi Mimi, I’m really sorry you’re going through this—it sounds incredibly distressing. What you’re describing doesn’t sound typical and may need urgent medical attention. Please consider seeing a doctor or a neurologist as soon as possible, and don’t hesitate to go to the ER if symptoms worsen. You're not alone, and there are professionals who can help figure out what’s going on. Sending you strength and hoping you get answers soon.