Clarkson's Disease and Systemic Myeloma
This is really about two issues: First, systemic myeloma, a cancer, which attacks every cell in the body and makes some diagnosticians think the patient has multiple diseases when all they have is one disease attacking everything; and, second: Clarkson's disease. Clarkson's is often mis-read as shingles, sunburn, psoriasis, dermatitis, etc. Mine has been diagnosed as all of these, plus poison ivy and other allergies. It attacks the capillaries just under the skin surface, breaking them open and turning the skin red, gray, black, speckled, etc. Clarkson's also attacks interior organs and tissues such as lungs, liver, intestines, tongues, brain, etc,; by breaking the tiniest blood vessels open. It often makes these swell, much as Gelsolin does. The genetic code is CALR. You can find it on http://www.omim.org/entry/calr. Any diagnosis which includes more than 2 or three diseases should be suspected as being for a systemic disease. I have about 350 markers of Gelsolin, Fukatin LGMD2m, Clarkson's, and Cardiomyopathy. All but about 10 of them have been verified by clinic lab work.
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Such a long journey to get a diagnosis. Thank goodness we now have the advantage of genetic testing. How did your diagnosis shift or treatment plans changes after identifying the markers?