3 years no diagnosis, struggling with symptoms — Scope | Disability forum
If we become concerned about you or anyone else while using one of our services, we will act in line with our safeguarding policy and procedures. This may involve sharing this information with relevant authorities to ensure we comply with our policies and legal obligations.

Find out how to let us know if you're concerned about another member's safety.

3 years no diagnosis, struggling with symptoms

Stillsearching123 Member Posts: 3 Listener
I've been suffering disabling symptoms which have gone undiagnosed for almost 3 years. I was 19 years old when I was struck by extreme constant nausea, upper abdominal ache, approx 2 inches above belly button. I went from being extremely active to having barely enough energy to make the stairs. I have very cold feet externally but feel extremely hot to me, dizziness, extreme bloating, heat intolerance, weakness (especially in legs), brain fog, inability to sleep unless I take sleeping tablets.

My stomach makes this sound when I press lightly on it


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 has been mentioned and I've just had a breath test for gastroparesis which came back negative. But would this cause such debilitating symptoms?
Another doctor mentioned the possibility of POTS and Ehlers Danlos???
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.
I take the strongest anti nausea medication, but nothing works.
Would really appreciate any help! Thanks in advance.


  • woodbine
    woodbine Member, Community Co-Production Group Posts: 7,710 Disability Gamechanger
    @Stillsearching123 good morning and a warm welcome to scope, it does sound like you are having quite a few test, obviously its impossible for us to diagnose so I think you will have to wait while the doctors make a decision.
    Be extra nice to new members.
  • janer1967
    janer1967 Member Posts: 16,311 Disability Gamechanger
    Hi and welcome to the community 

    I'm sorry you are going through all this and hope you get some answers soon 

    As above we are unable to give medical advice but maybe other members can relate there are members with some of the conditions you have mentioned being a possible diagnosis 
  • [Deleted User]
    [Deleted User] Posts: 0 Connected
    Hi @Stillsearching123 and a warm welcome to the community! I'm sorry to read about what you've been going through. Did your symptoms suddenly appear or did they happen gradually?
  • Stillsearching123
    Stillsearching123 Member Posts: 3 Listener

    Hi there thanks for your responses. Sorry, I realize I can't get a diagnosis here, just posting in sheer desperation that these symptoms make sense to anyone, and it's such a long wait between tests and appointments that it just leaves you clutching at straws.

    My symptoms came  suddenly, but haven't let up for a moment since. It's not like there's good days and bad days or flair ups, it's just constant, and the fatigue is so extreme.

  • callilynch
    callilynch Member Posts: 3 Listener
    I have these exactly symptoms and am seeking a diagnosis as well.
  • Stillsearching123
    Stillsearching123 Member Posts: 3 Listener
    Hi, so sorry to hear you're suffering like this too. I've just been referred to a rheumatologist to look at the possibility of a connective tissue disorder, after exhausting most avenues with gastroenterologist. What kind of Dr are you under at the moment? 
  • callilynch
    callilynch Member Posts: 3 Listener
    Im waiting to see a neurologist they have a feeling it’s POTS but I’m not sure I’m fully convinced on it. I’m waiting on testing for that. I actually did testing for auto immune and it all came back negative 


Complete our feedback form and tell us how we can make the community better.