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Autoimmune Diseases | Last Active: Apr 30 10:33pm | Replies (189)
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I looked up Behçet's. It's no wonder that no one could diagnose you; it's described as a very rare disease that mainly effects men, of Turkish or "Silk Road" asian ethnicity (Turkistan, etc.), in the 30 to 40 age group. Even if a doctor were very familiar with Behcet's I'm sure that they would immediately dismiss it as a possibility given that you don't appear to meet any of the usual criteria for the disease. I can't imagine that most medical schools even cover the disease; sounds like the only doctor who might have been able to spot it would have to be a specialist in exotic (i.e., foreign) diseases.
Replies to "I looked up Behçet's. It's no wonder that no one could diagnose you; it's described as..."
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I hear you. It is far less common in those of European descent.
But I had the huge aneurysm. All they have been doing is "watch and wait" to crack me open like a walnut and replace the whole shebang. I had so many other "off" labs, including a wicked high ANA since 2019. I couldn't even get them to run a manual HEp-2 IIFA to more accurately evaluate the pattern. Most ANA tests are going to multi-beaded assays instead of immunofluorescence. Those aren't even ANA tests. They are running all of the common sub antibody tests at once (anti-Ro, anti-Smith, etc.). These tests are far less sensitive. And even when using the HEp-2 IIFA test, the pattern results are usually determined in automated fashion by software.
My pulmonary artery is dilated as well. Should be around 2.7 cm and is 3.4. I have the eye inflammation, the mouth sores, new skin irritations from a millon contact allergies... The list really just went on and on.
Behçet's can be treated. There are case studies of people with pulmonary artery aneurysms that shrunk in size when treated with steroids and cyclophosphamide. That sounds infinitely preferable to trying to recover from open heart surgery. This is a particularly risky one, too.
It seemed obvious to me that an autoinflammatory vasculitis seemed to be in play. It would have been nice if any of the dozen doctors I consulted for my aneurysm acted like they gave a single poo about figuring out why? They weren't going to, though. It had to be me.
Maybe they should admit they don't know what they don't know and call in a higher level diagnostic team? Or run some additional tests. They checked the few items on their algorithm and threw up their hands . "We tried the bare minimum expected of us and we're all done." Fortunately, I wasn't.