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Can't get a definitive diagnosis

Autoimmune Diseases | Last Active: Dec 4, 2021 | Replies (27)

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@oldkarl

@athenalee Thanks for the comment. I learn something new every hour, I think. 18 months ago I developed red and gray-black patches over my forehead, which spread to my entire face. It hurt like a hornet making a nest in one's ear. Anyway, the lab at the hospital said I had shingles. The doc said I had shingles. However, they could not prove it because they could not find any Zoster in me, as I have never had Chicken pox. So I searched for the answer. In my genetic work, I found I have at least a score of CALR (Calreticulum) versions, which cause just such a thing. I also have JAK2, one version, which can be part of it. The disease is also called "Clarkson's Disease", or "Systemic Capillary Leakage Syndrome", or "Exploding Capillary Syndrome". I found from experience that the best treatment is an OTC salve called "Gold Bond Psoriatic Creme with Aspirin". It not only killed the pain almost instantly, but eventually faded out the red and gray-black areas on my face. Now it is in my hair, and I may have to shave my head to put it on, unless I can find it in a thinner liquid form. Thanks, @athenalee, for you words.

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Replies to "@athenalee Thanks for the comment. I learn something new every hour, I think. 18 months ago..."

Could you thin it with a cream like Eucerin Skin Calming Cream or something besides lotion?

Keep persevering! I’m glad you were able to find a solution. Perhaps some day more physicians will think out of the box. But, I think you’re correct on the answer being in genes. And, that is certainly a growing field of research that lends some hope.