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  • Undiagnosed for almost 2 years, advice needed!

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    Old 10-21-2020, 03:06 AM   #1
    Lennon21
     
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    Lennon21 HB User
    Undiagnosed for almost 2 years, advice needed!

    Firstly, thanks for taking the time to read this. I've been suffering disabling symptoms for over 18 months and am no closer to being diagnosed. I was 19 years old when i was struck by sudden extreme constant overwhelming nausea, upper abdominal ache, approx 2 inches above belly button. I went from being extremely active to having literally barely enough energy to make the stairs. I always have very cold feet externally but feel extremely hot to me, dizziness, knawing pain in stomach, heat intolerance, weakness (especially in legs), brain fog, inability to sleep unless I take sleeping tablets, feeling of pressure on heart sometimes, and flushing when pain is really bad.

    I initially lost 2 and a half stone in weight, but have managed to start putting some back on by prescription nutritional drinks.
    My symptoms are disabling, just taking a shower in the morning depletes me of energy for the rest of the day, but doctors I've seen haven't been able to give any kind of diagnosis.

    When I gently push down 2 inches above my belly button, where the pain is, I get these really loud gurgling noises from my stomach.

    I had a 3 day heart rate variability monitor which showed no parasympathetic activity during the day, and it fluctuates between sympathetic and parasympathetic during sleep.

    The possibility of autonomic dysfunction and Ehlers Danlos has been mentioned and I'm waiting for a gastric emptying study to see if I have gastroparesis.
    I've had thyroid tests, tests for Addisons disease, MRCP, brain CT scan, barium meal, various blood tests and an ultrasound, none of which found anything.

    The only thing I've had done that actually looks at that part of my stomach was the ultrasound and that was a year ago. But that's where the constant ache is, and the loud bubbling noises when I touch it. My bowels are regular, I'm not constipated, and barium transit time was fast, so could this be gastroparesis? Would that cause all of these many and varies symptoms? If so, what is causing the gastroparesis?

    It's impacting every part of my life, I'm so ill but don't seem to be getting closer to a diagnosis. Any help or advice anyone can provide would be much appreciated.

     
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