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Post by itchin4answers on Mar 11, 2014 21:29:13 GMT -5
I am well passed researching my symptoms. However, my Mum had mentioned to my sister (Oncology Nurse 21yrs) about my itching. My sister was very concerned as she said itching is a symptom of Lymphoma (which I knew long ago). Long story short, I saw my sister this morning and she mentioned a very interesting and complex skin condition called "POROKERATOSIS". My sister also does home visits (non related to cancer) for Rheumatoid Arthritis suffers. She will either administer the injection and/or teach the patient how to do it themselves. She said she visited a patient who told her about having this condition, which mainly effects sun exposed areas, and is often seen in older people. My sister had never heard of this skin condition and researched herself. My sister is extremely intelligent, though we never talk about the fibers or LYME. My sister believes me only because my parents said "we've seen it ALL it's real!". My sister suggested a good Dermatologist I could see. Unfortunately, I am not in a financial position to fly to see Dr Mayne interstate. Who knows, it's worth giving it a try, especially since "I'm cured" (though not his words) according to the Neurologist. I don't have the mental energy to read medical documents, so if anyone finds anything to explain in "simple laymans" terms - all the better. Thanks. Porokeratosis emedicine.medscape.com/article/1059123-overview
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Post by itchin4answers on Mar 12, 2014 0:34:36 GMT -5
Porokeratosis (PK) are inherited as an autosomal dominant trait; however, sporadic cases are also known to occur. DSAP is the most common of the five clinical variants of PK and usually develops in the third and fourth decades of life, with a female preponderance. It is characterized by multiple, brown, annular, keratotic lesions predominantly on the sun-exposed areas. Facial lesions are seen in approximately 15% of patients and lesions spare the axillary vaults, inguinal folds, perigenital regions, palms, soles and mucous membranes.[1] Chenosky et al. first described DSAP in 1969 in Texas population. www.ncbi.nlm.nih.gov/pmc/articles/PMC2807725/
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Post by itchin4answers on Mar 12, 2014 1:39:48 GMT -5
Correction: the patient has a carcinoid tumour of the bowel.
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Post by itchin4answers on Mar 15, 2014 17:20:12 GMT -5
I went and got the referral from my GP to see this Professor of Dermatology. I looked him up and his area of expertise and interest is "Psoriasis" - geeze Tony would be good if you were still alive mate! you were covered in it.
My appointment to see this Dermatologist is the 5th June! oh wow how quick is that...lol..."NO" people don't have skin problems do they?....particularly with the skin being the largest organ of the human body.
The 3 month window period gives me time to think (again and again). I want a Dermatologist to believe in what I have. I know I don't have Porokeratosis, yes I itch but I know why I itch. Hair like fiber optics running through the skin and being generated under the skin is very bothersome. I did ask my Lyme doctor once about seeing a doctor in Melbourne who does treat Lyme patients. I asked if I could mention the recent findings ie. Morgellons is spirochete's in the skin. My Lyme doctor said IF I were to present that document to that particular doctor I would have to do it ever so discretely.
Discretely? what is this shite about being discrete?
Sorry, but these doctors have major hang ups and THEY need to get passed it. I am (at this moment in time) prepared to tell all and show the document about human "yaws" aka Morgellons.
What are my risks?
The Dermatologist doesn't believe in the theory of Lyme in the skin and prescribes a different steroid cream and I never see him again. He could contact the psychiatric team....(actually this is the least of my worries, as I can still run fast!)
I have the RIGHT to be heard. I have the RIGHT to respect. I have the RIGHT to health care.
There are too many obstacles and red tape with this disease and MOST diseases, but heck I really would like "someone" to hear me out and consider the possibilities.
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