PBC Foundation
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Combination of sand like substance as well as grainy salt like substance underneath top layer of skin. Anyone else experience with PBC?

Hi all! Previously I was diagnosed with seborrheic dermatitis. However after several dermatologist visits & trying the expensive prescribed shampoos and scalp oils the dermatologist informed me that the extremely dry, dandruff, and something that feels like a combination of sand and grains of salt was coming from somewhere else other than my scalp. The dermatologist also stated that these were only sensations. In my opinion it is much more than sensations. This stuff is actually coming out of my pores. More so when I force it out by squeezing or scratching. It has consumed my entire body, from scalp to bottom of feet.. This is driving me crazy. I spend most of my day and most of my night pushing, scratching this mess from under my top layer of skin.

Does anyone think that this is a part of PBC or could it be something else. I was just recently diagnosed as having PBC.

Thanks in advance for your response..

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Poor You, it must be awful, I'm very sorry for You. Surely it can be of PBC. Sg good: if this sympthom you have so strongly, there is a chance, that some of also not pleasent sympthoms will not visit You. Keep better!

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Thank you gizocsi

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sorry I cannot help you with this problem. my daughter has psorisis (excuse spelling) but that is all on the outside of her skin. Hope that you get sorted out soon. Take Care.

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Thanks Ellanvannin

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I think I would go back to the dermatologist and show him what happens if I was you. He might be able to send some of the stuff that comes out off for analasis and get you some answers. its not something that I have experienced but for your sake needs sorting out.

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I have this too, 6 dermatologists (at 180 a pop, my insurance won't cover it) and most will not even look at any matter you have collected, 3 have told me I am doing this to myself...I have yet to meet a dermatologist who's salary is justified.

I have other health problems that will be resolved hopefully within a few months, I was given both HepC and MRSA during chemo for late stage cancer (clinic re-used chemo port access needles, hard to believe but true). I hope to rebuild immune system somehow...MRSA is now silent and I begin treatment for HepC and perhaps after that my body can fight this.

The reason I responded to your well meaning comment is that a dermatologist is about the worst thing you can do, despite HIPAA laws, they do communicate with one another about their patients, now each time I see my PCP, cardiologist, oncologist, etc, the first thing they ask is ''why haven't you made/kept appt. with a psychiatrist?'' My answer: I have a counselor I talk to regularly (bi-monthly now, weekly thru chemo), there is no evidence that I have any depression issues.

PCP wants to drug me out of my delusions re my skin, she at least will come out and say it. Perhaps after Hep is gone (along with the skin distress it brings), MRSA is in check, if this persists, I may take the drugs....just so I can pretend it isn't happening, like a dozen doctors.

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My daughter has psoriasis too and recently after researching something for her, I came across something else which is the dermodex mite..... I read about this women who said she was losing a gritty sand type stuff from her scalp her dermatologist said it was nothing... but a second opinion found the dermodex mite which in certain illnesses can apparently get out of control and cause this symptom. It might be worth asking your dermotologist about this as it sounds similar to what you have?

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Oh wonderful EAJSWW. Thank you very much. I will check dermodex out and consult my dermatologist.

Had my first CT liver biopsy this morning. All went well and the people at the hospital were wonderful. Now waiting to see what my gastro doc's findings.

Wishing all a blessed and wonderful weekend.

And thanks again EAJSWW.

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What did u ever find out?

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I have been having the very same symptoms and I keep getting put off by Doctor"s also not knowing what this is. It's crazy because,these things I describe as salt grains itch that when I dig them out I find somewhat relief but they are all threw my skin from the top of my head to the very bottom of my feet. I am wondering if you found anything out.?

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Hi there sorry to say but I think I'm going threw what you just explained. For the past 3yrs I have been seeing different Doctors,had lots of blood test done,went to see two Dermatologists and still nobody can explain what I'm going threw. I have those salt grain things all under the top layer of my skin from head to toe and also coming out from every hole inside out. They sometimes itch that it feels like they are buying or crawling sensation and it drives my Insane not knowing what is going on and that there isn't a Professional yet that I have seen experienced enough to understand what is going on. I had an endoscopy done and found out I have Esophageal Candidiasis however I been treated with an antibiotic but that has not taken the other symptoms away that I'm experiencing. I also been diagnosed with having Anemia since then and my Immune System is not helping me. I bow my nose all day and night,caught and sneeze more then I ever had since this happened. I'm at my witts end and need answers. I hope things get better very soon.

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Sounds exactly like an overgrowth of demodex. There's a wealth of information online but doctors won't help much. Get on an antifungal, internal and external, avoid sugars and do what you can to bring your immune system up. Tea tree oil and a high quality probiotic will be your best friends.

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Thank you and I'm going to look that up

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Hey there kathjean..I just liked that up and its nothing the same what I'm experiencing. I am going for blood work again next week because I've been through all skin test and they did not find any mites. It sure is a mystery but thank you for your feedback..much appreciated.

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