Undiagnosed and rare conditions
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GI Symptoms, B12 Deficiency, Muscle Spasms

junebugjunebug Member Posts: 2 Listener
Hi there,

I think I'm here for some moral support and advice since I've been living with something undiagnosed for a year now and it has recently got worse. 

I am female and 23 years old. A year ago I suddenly got very bad diarrhoea and have had it every day since (although not as severe as when it started). The thing that bothers me most is that I feel nauseous every time I eat and very severely nauseous in the mornings as soon as I wake up, even before I've eaten. I have lost weight because it puts me off eating. I have now been unable to leave bed for three weeks because of the worst fatigue I have ever felt; eating, coffee, rest - nothing will help it. I also have a mild constant headache and see stars when I stand up. It has taken my GP a year to find that I have a B12 deficiency. Since starting sublingual drops I have noticed a big change in my mood (less annoyed and anxious) but no change in my physical symptoms. I also get muscle spasms every half an hour or so which I can see though my skin and last for minutes. I am constantly insanely thirsty and have a dry mouth and eyes. I have had the HbA1c test for diabetes which was normal. I have had a colonoscopy and endoscopy which were both normal. I've been on omeprazole but it hasn't done anything. 

My GP has told me that he thinks I'm anorexic and have hypochondria (well, "health anxiety") because all the tests he's done have been normal other than the B12. I feel like the way he has handled this has made me not trust him, which has made me look like a hypochondriac.

Has anyone else had anything like this? Have you got any general advice on living with something undiagnosed that means you can't work? I'm about to take a month of sick leave but I'm considering leaving work indefinitely and moving back in with my parents. I'm lucky enough to have my dream job and I'm really upset to be leaving. 

Thanks so much in advance to those who respond,
Junebug

Replies

  • Cher_ScopeCher_Scope Posts: 4,071

    Scope community team

    Hi @junebug Welcome to our community and thank you for sharing your story with us.  It sounds like you've been through such a challenging time and I'm sorry we meet under these circumstances :(

    It's frustrating to feel your voice is not heard and I understand how upset you must be.  Have you spoken with your employers about what's happening?  Maybe they could look to implement some reasonable adjustments to meet your individual needs and help you remain at work after your sick leave.  Here's more more guidance about having that discussion with your employer.

    In relation to your medical situation, do you feel that changing GP's might be useful?  Sometimes getting that 'fresh pair of eyes' and a second opinion is handy, particularly if the relationship between you and your GP has broken down to the point you no longer trust him.  

    Unfortunately, we would be unable to offer specific medical advice and I'd encourage you to follow up your concerns with a medical professional wherever possible.  I know how awful nausea can be so if you haven't already, make sure to visit these NHS tips for coping with nausea and also get back to us with any other questions you might have.  I hope things get easier for you soon  <3
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  • chiariedschiarieds Community Co-Production Group Posts: 9,222 Disability Gamechanger
    Hi @junebug - & welcome to the community. I know how frustrating it can feel when you have problems that remain undiagnosed for a while, & I'm sorry that's how things are for you at the moment.
    Do you feel nauseous if you try something simple like soup? Or has your Dr recommended nutritional/supplemental drinks for you to try? I'm hoping these are avenues that might be explored. I'm sure not being able to eat will contribute to your fatigue, & also those 'seeing stars' moments. Try & keep your fluid intake reasonable, even if it's just water, as being dehydrated can contribute to headaches. Coffee isn't the best thing either, as it can cause slight dehydration.
    It does sound like a good idea to see, or at least talk to, another GP in your practice if that's possible. You would be better with a GP you feel you can trust. Please kindly let us know how you get on, thank you. :)
  • junebugjunebug Member Posts: 2 Listener
    Hi @Cher_Scope and @chiarieds. Thank you so much for your advice. In terms of my employer I'm incredibly lucky that they've said I can take a year out and come back. I think you're right about changing GP; I was apprehensive about it because I was worried about things then taking longer if the new GP redoes all the tests but I think at this point things are going to take a while. 

    Unfortunately I feel nauseous no matter what I consume - even water. But I think nutritional drinks is a really good idea. I'll ask the doctor about that and look into it myself too. I'm drinking a lot of water - sometimes more than 3.5L/day because I'm just constantly thirsty and always feel dehydrated. 

    I'll make sure I let you guys know how I get on. Thank you so much again for the advice. 
  • chiariedschiarieds Community Co-Production Group Posts: 9,222 Disability Gamechanger
    You're very welcome @junebug - do make a list of things you'd like to discuss with another GP. All the tests you've had done will be in your medical notes, so altho with 'fresh eyes' another GP might want to redo a couple of tests (tho they might not), it shouldn't make things necessarily take longer.
    I'm sure you will have mentioned previously that you always feel thirsty, but think this might be worth mentioning again. Somewhat perversely drinking too much water (altho there are no clear guidelines on this) can also make you feel nauseous & give you headaches too. Hope you find out more soon.  :)
  • deb74deb74 Member Posts: 766 Pioneering
    I had similar problem to yours and I went to my doctor he sent me away saying there was nothing wrong with, A couple of weeks later I went back because it had got worse. This time he said it was all in my head and again told me there was nothing wrong with me. I felt really frustrated because I knew there was something wrong. I then changed drs. My new dr  did lots of tests and diagnosed me with ME, Fibromyalgia and heart valve disease. It is definitely worth seeing another dr! 
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