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Autoimmune ???


Achilles2323

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I know from reading about MCAS that some test cannot be done unless a specific symptom shows up. A urine test is done within 4 hours when flushing symptoms present themselves. Have you had any immune system testing done? If not, I would suggest you try to see a true immunologist. If your body is not recovering from virus, sinus infections, or someone gets sick In the family and then you get sick with the same thing then it might have something to do with your immune system.

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People often have autoimmune disease for many years before any tests show abnormalities. My mother is a perfect example. She was symptomatic of Hashimoto's for almost 10 years before the tests showed anything abnormal. The docs wouldn't treat her for all that time. I also know someone who has Lupus who was symptomatic for years before tests showed anything. My sister also has Hashimoto's and my grandmother had Grave's. My thyroid is enlarged but they won't treat me because my blood work still comes back within "normal" limits.

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the short answer to your question is yes. I'm not sure though what you mean by "every test" as there are probably hundreds of tests that can reveal autoimmune issues - I doubt there is anyone who had them all ;)

More specifically, there is published researched about the autoimmune autonomic ganglionopathy (an autoimmune form of dysautonomia) stating that only 50% of patients have positive blood work.

Look up Dr Vernino, autoimmune autonomic ganglionopathy or browse through my older posts - there is a thread where I posted a lot of his articles. Some of the articles explain the typical symptoms associated with this condition as well.

Also, along the lines of what Katie stated above, there is something called "seronegative lupus" - symptoms are present, yet blood work is negative.

Hope this helps,

Alex

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I am equivocal for Scleroderma, SCL-70, the systemic type, which means not negative, but not quite positive either. They are watching me, in other words. I do have Fibromyalgia and Asthma. There are so many autoimmune diseases, over 150 of them. They only had a handful, that were known at the time I graduated nursing school, which was 34 years ago!!

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Yes - autoimmune diseases can be quite difficult to diagnose. My personal feeling is that there are a whole bunch of autoimmune diseases out there that we know nothing at all about. When I began my quest to find out what was causing my symptoms, it was about 20 years + before I was diagnosed with AAG. My primary physician at the beginning told me that he knew in his heart something was wrong and it was probably autoimmune but, he had no way of testing for it. "We'll just wait and see" - something would turn up positive eventually. It is always far better to treat the patient and symptoms than to treat (or not treat) because of a lab value printed on a piece of paper.

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I feel that I'm fighting this battle given my immune response to steroids. No positive tests, and even told I have nothing, but that doesn't guarantee that something is below the threshold. Hopefully some day there will be a better way to detect immune dysfunction in its earlier stages.

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I was told specifically by my POTS neuro that just because my auto immune markers came back negative it didn't mean I didn't have an auto immune disease. He said it just meant I didn't have one they knew how to test for yet.

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