Tests, tests, and more tests…

I recently had a few tests done to rule out potential causes for my dysautonomia. The first test was conducted by my Cardiologist to check the levels of stress hormones that my adrenal glands are producing over 24 hours. If the levels are significantly elevated, it could suggest a pheochromocytoma, or adrenal tumor. This was called a vanillymandelic acid test. The normal range for stress hormones to be in is 0.0 – 7.5/24 hours. My range was normal at 2.7.

So, thankfully, a pheochromocytoma is unlikely.

A couple of weeks after that, I met with an Allergist to discuss Mast Cell Activation Disorder. Sometimes the skin on my upper torso breaks out in a red “rash.” The skin doesn’t really look like a rash though, it just looks warm and flushed. So what is MCAD? Everyone has mast cells in their body. People with MCAD have an excessive number of mast cells that release substances like histamine. How is this related to dysautonomia? All of the substances released by the mast cells can attack the nervous system, causing it to malfunction.

The Allergist ordered a 24 hour N-methylhistamine test and a serum tryptase blood test. The normal range for the N-methylhistamine test is 30-200. My result was 144. The normal range for the serum tryptase test is 2-10. My result was 2. Nothing remarkable about either result.

There’s really not a whole lot else for the Cardiologist and Allergist to do on their end since this all stems from the nervous system. So who did I make an appointment to see? A neurologist. I’m scheduled to see Dr. Barboi in Illinois at the end of July. He was booked pretty far out but I’ve been told an appointment with him is well worth the wait because he specializes in dysautonomia. I’m super excited!

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