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All the symptoms but blood work normal

Discussion in 'Not Diagnosed Yet?' started by tdrphilly, Aug 17, 2016.

  1. tdrphilly

    tdrphilly New Member

    I am surprised (and so is my rheumatologist) that all of my bloodwork recently came back normal (ANA, etc as well as a number of other things to rule them out, like the heps). I have: a history of thyroid disease (I have had graves' disease twice), arthritis (bony protrusions in my sacroiliac joint, heels, and my left hip and hip socket is somewhat deteriorated, inflammation in costochondral junction), I have hyperlaxity/hypermobility, musculoskeletal pain. My recent kidney tests show impairment of kidney function. Hair loss (and I am now within the normal thyroid number ranges so my current hair loss is not due to thyroid issues). I get frequent low-grade fevers. I have had a few periods where my blood pressure dropped to dangerously low (once I passed out on my bicycle and once I was almost was med-evac'd from my job) but not iron deficient. Whenever I get a respiratory infection, I get reactive genital ulcers. And I have a few more symptoms, but no butterfly rash. So far nothing neurological.

    My rheumatologist was sure that it was going to come back positive for lupus, but all my numbers are normal. Why is this? Any suggestions about how I should move forward? Is there some other thing that could be causing all of this?
  2. lazylegs

    lazylegs Moderator

    Welcome to the site.

    It sounds like you will need to have symptoms treated as they present themselves. Your rheumy will most likely want to monitor you every so often to see if there are any changes in your blood work. I am sorry I could be of more help.

    Take care,
  3. DizzyGirls

    DizzyGirls New Member

    Hi there! I'm new, but not new to chronic illness. My daughters have Ehler's Danlos Syndrome as well as the Dysautonomia that goes with it. Think my oldest has developed Lupus in addition. Your hypermobility/hyperlaxity and musculoskeletal pain sounds like the Hypermobility type of EDS. The blood pressure drops sound like Dysautonomia (sub-category Postural Orthostatic Tachycardia Syndrome-POTS) that almost always accompanies EDS. Hope you can find someone knowledgeable to help!

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