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Have itchy and sticky dandruff, sores on scalp and hair loss. What is the disease and treatment?

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I have had a HORRIBLE scalp problem for almost 2 years now and am in desperate need of HELP! It started with simple itching. I presumed dandruff - although had never before had any problem. Nothing worked. Soon, little sores were popping up and between the sores and itching, my hair started falling out. Then it became painful and little sharp shards would form around the sores or even just pop up on their own. In addition, there seemed to be some underlying "thread" almost weblike that was causing problems. Since the start, I have been through SO MANY different stages of this thing. I have seen 2 dermatologists, a regular physican, and a specialist at Loyola University. The specialist was really disappointing. He examed me for about 2 seconds, took a biopsy, called to say it wasn't cancer and wished me luck! I have little to no hair left and live like a hermit. It is very painful to put a wig, hat or scarf on my head. Sometimes it is much worse than others. As brief as possible -

Phase 1: I call the "shedding phase" Doc gave me meds to help with this, but they really did nothing, in addition to many special shampoos (which I still use). Mostly t-fal. I had to scratch to get the "gunk" off as it was hurting and making me crazy! There were horrible wblike threads beneath the skin that were very painfu and seemed to be causing some problems. Don't know what it is. Doctor thinks I'm making it up. I honestly dropped 2 hat sizes so much came off!!!! When I felt I was down to my real scalp (except a 2"x2" area in the back), i was thrilled! I thought it was over. But the gunk came right back.

Phase 2: Yes, I tried not scratching - cutting my nails to nubs, sleeping with mittens or potholders sewn to my clothes! It didn't matter, the gunk persisted, I continued to itch, but now the itching was not nearly as bad as the PAIIN. I now fellt like the stuff on my head was acting like a vice and clamping onto my head. It was horrid. I also seemed to leak this nasty fluid near my ears (slightly above and behind) and it smelled terrible, despite washing my hair daily. Also get this fluid at 4 other places on my head - usually places of lots of build up and sores. Always same place.To get any rellief, I had to wash or at least rinse my head in HOT, HOT water up to 12 times a day! The hot water didn't bother my head at all - it was like I couldn't even feel it, but it seemed to control the build up a little. The little threadlike webs beneath the skin still a big problem. They seem to drive the sharp shards. I will pull one out on the right side of my head and a shard will suddenly pop up out of my scalp on the top or right. If I follow the weblike structure, it leads to the shard! Doctor still seems to discount this.

Phase 3: Most itching now gone. The gunk continues to build up, sores develop, and the main problem are these sharp shards that come out of my scalp! I can't sleep, cuz I can't lay my head down. I work on my head for HOURS so I don't claw at it, trying to carefully remove them. It's horrible. Still no hair to speak of except in patches sort of. Different parts of my head are worse than others at times, but it's all gone through the ringer at one time or another. Usually it's the whole thing, though. Trying so hard not to touch it, but it doesn't seem to help. Nothing does. Took anti-biotic to treat for hair folical infection. Didn't work either. Also put on several other meds - nothing has worked or changed anyhing. Kept picture diary of the sores, the "threads" beneath the skin, and shards poking and pulled out. Stil sticky, oily leakage from same places.

Phase 4: Things seemed to get a little better. About 1/2 my hair grew back, even though I could still feel nasty gunk build-up beneath it. The back 2"x2" still the main problem and protrudes hugely from the rest, but I can't get rid of it no matter how hard I try. It's like a rock. Smelly, oily residue no longer an issue. Still pulling out sharp shards though. Trying to heal.

Phase 5: "The big shed" Once things started building up big time again and the the theadlike webs beneath skin seemed to inflame, I couldn't stand it anymore and wasn't getting anymore help. I clawed my head until every bit of gunk, including the back 2x2" were GONE. About a week of unbelievalbe pain, but it's gone. I was exhausted but happy to be rid of it all. As I did this, all of the weblike stuff finally disappeared at last too! This was also extremely painful as I had to literally pull them out during the "big shed" process. They came out like small threads of fishing wire. Nasty. It curled up immediately and although hard as it came out, would crumble within a couple minutes of being out. It was horrible. But all is gone. Waiting to see what will happen. Very little hair left.

Phase 6: This is where I am now. Has gotten somewhat better - but definitely not healed by any means. Gunk still builds up regularly, although I am now fairly good at getting it off without hurting myself. I'm also getting very good at removing the shards, so the sores are minimal now too. Once in a while there is still a really bad one and it causes a sore about the size of a dime or half of a dime.The weblike threads have not returned and this is HUGE. Very happy about that, as it has decreased a lot of the pain, although I still suffer from sharp shards and gunk build up. About 6/10 of my hair has returned, but I can tell it's not nice beneath it. The oily, sticky gunk has returned again but only by my ears. There is a constant, sticky, strange build-up of a different sort by my sideburn area. Very sticky, very hard. Happens several times a day. I "think" it may be coming from 4 locations, also close to both ears - the same on both sides. They are odd little "sores" that look more like a pinched piece of skin. Very painful to try to remove, but I have only to have them return within hours. Not sure if sticky fluid is coming from them, but it didn't return until those popped up - which happened right after the "big shed" in phase above. Can't get rid of them no matter what I do. Hair is trying to come back. I still have some pain, but not nearly as much.

So now I wish I could control the sticky horrid build up by my sideburns. Also the build-up of gunk under my scalp, and of course, the pop up of these sharp shards. While this has all lessened, it is in NO way stopping at all. It just seems to have found a comfortable mode. Meanwhile, my life is still in ruins. I can't go out, cuz it's still too painful to wear anything on my head - even something light. Very painful.

Can you help or refer me to a scalp specialist near the Chicago area? I would even travel elsewhere if the right person was somewhere who could hlep!!!
thank you!
Posted Mon, 18 Feb 2013 in Skin Hair and Nails
Answered by Dr. Sudarshan 2 hours later
Thanks for writing in.
I appreciate the details you have given of your condition.
Only two things come close while going through your description first would be scalp psoriasis and second would be severe seborrheic dermatitis of scalp.
Fortunately both are benign and controllable if not curable.
If you can upload the pictures of scalp from 2-3 different areas,they would be very helpful in predicting your condition.
You can find a specialist @
Advanced Center of Trichology,8745 W Higgins Road, # 130, Chicago, IL 0000
I would be available for any further clarification.
Treatment can only be suggested on confirmation of diagnosis.
Upload the photos and we can continue the discussion here.

Skin Hair Nail Specialist.
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