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Topic: Anyone Else Dealt with Undiagnosed Health Issues?

16 posts, 0 answered
  1. EC123
    EC123 avatar
    27 posts
    18 October 2021

    Hi all,

    I have mentioned in some previous posts I have some undiagnosed health issues (doctors have ran multiple tests and found some abnormalities but don’t know what is causing them).

    Everyday I am struggling not only physically but mentally. I am so worried something serious is wrong. My mental health has taken a massive plummet. I try to push myself to do some sort of exercise and talk to people but I mainly find myself at home by myself crying all day out of fear. I am not vaccinated yet as I have been advised not to until we find out what’s going on and can’t go out and see people (for that would be risking my health).

    I feel so alone. My uni grades and studies are falling apart, my family is sick and tired of seeing me this way, I barely see my boyfriend and don’t see friends, and I’m struggling to see this getting better. Things are getting really dark now :(

    Is anyone going through or gone through a similar experience? Xx

  2. jaz28
    Community Champion
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    jaz28 avatar
    204 posts
    18 October 2021 in reply to EC123

    I have gone through a similar experience of being and young and unwell. Being between diagnoses sucks. I was eventually diagnosed with IBD. Whilst having a life long disease is hard to accept, I am also happy to know what is wrong and have control of my symptoms now (I’m in remission!)

    I just wanted to say that I know how it feels to be sick and young. Make sure you explain to your loved ones how you are feeling (physically and mentally) because if it is not a visible illness they might not realise. They are there to help you and support you, so communicate. A good family, parent and support system really helped me through my diagnoses, and being honest with them is key to that. Otherwise they don’t realise how you are feeling.

    the doctors will figure it out, it can take time though, there are so many options to consider and the doctors want to get it right (you don’t want a misdiagnosis!)

    Please hang in there and know that it will get better. Once you find out what is wrong and get some treatment, brighter days are ahead. You can also see a psychologist to help you through these hard feelings. Oh, and talk to your doctors about how you feel - mentally and physically. You are your best advocate.

    stay strong

    jaz

    1 person found this helpful
  3. EC123
    EC123 avatar
    27 posts
    18 October 2021 in reply to jaz28

    Hi jaz88,

    Thank you so much for replying xx

    Gosh I’m sorry to hear you have been through a tough journey, but I’m also glad to hear they figured out what was going in and you’re in remission! That’s amazing!

    Yeah I definitely agree, a good support system is everything. My family have been extremely supportive I am very lucky, I know they’re just really upset seeing me this way. I currently talk to a psychologist over Telehealth as well and we discuss these issues. As you said it’s draining and does take its toll.

    If you don’t mind me asking, how long did it take for you to get a diagnosis? So far I’ve been really unwell for four months.

    Thank you again for your kind and positive words xx

    1 person found this helpful
  4. jaz28
    Community Champion
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    jaz28 avatar
    204 posts
    18 October 2021 in reply to EC123

    No worries! I understand completely. And thank you.

    I am glad you have a good support system and are talking with a psychologist.

    my diagnosis took about 6 months from the first symptom to being diagnosed after tests (I was finally diagnosed in hospital because my doctor took forever to get me to a specialist in time), but with IBD the symptoms can get bad quickly without medication or treatment. Once I got the right treatment for me, everything has been smooth sailing. Even though it was a bit of a journey to get there.

    as I said, you are your biggest advocate so if you feel like your doctors aren’t taking you seriously you should push for it. I wish I did because then I might have seen a specialist before I had to go to hospital.

    my case is unique though but I am better now and on medication that keeps me in remission so my recent blood test was normal which was good.

    so keep fighting and make sure you listen to your body and do what you need to do. You will be OK. We are very lucky to live in australia and to be able to receive the great healthcare here !!

    stay strong

    jaz

    1 person found this helpful
  5. EC123
    EC123 avatar
    27 posts
    18 October 2021 in reply to jaz28

    Goodness me that’s a long time isn’t it. I’m sorry you had to end up in hospital before finally getting a diagnosis.

    Yeah definitely agree with us being our own advocate. My doctor doesn’t really know what else to do, and it’s left me feeling a little bit helpless but hearing your story makes me want to just push even more.

    We are definitely very lucky to live in Australia with the healthcare we have. Fingers crossed everything gets figure out and treated as soon as possible 😌

    1 person found this helpful
  6. Banksy92
    Community Champion
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    Banksy92 avatar
    107 posts
    18 October 2021 in reply to EC123

    Hi EC123,

    I can really relate to what you're going through. 2 years ago I had a mysterious pain condition that completely limited my life. I had no idea what had caused it and had been sent to so many different specialists over a number of months who could not pin point it or help me. I was incredibly depressed, anxious and it impacted all the relationships in my life terribly. Every day was a struggle. Finally when I was sent to the right people to help, I immediately felt relief. My journey to recovery was long and took work, but having someone tell me exactly what was wrong and that there was a way to fix it made an enormous difference. I had hope again. I could trust the health care system.

    I'm really sorry to hear what you've been going through, i know how isolating and terrifying it can be. But you are definitely not alone, and any time you want to express yourself or connect this community is a great place to come.

    If i were to have any advice, it would just be to not give up in asking doctors and seeing who you need to to get to the root of the issue. Once you have clarity it will help. The not knowing is the hardest part. It's wonderful to hear you have a supportive family and a psychologist to talk things through with, this is brilliant.

    And to be gentle and kind with yourself. I know things are limited for you right now, but what types of things do you enjoy doing? What small goals or activities could you plan to brighten your days while you get through this period? Maybe your family or boyfriend could help plan a few simple things to help take your mind off it and bring some ease to the heaviness of worrying... A backyard picnic? A special movie night? A sunny walk in a new area? Or whatever makes YOU smile :)

    Hope this helps, we're always here if you need us.

    1 person found this helpful
  7. mocha delight
    mocha delight  avatar
    529 posts
    19 October 2021
    Last year I was diagnosed with coeliac disease & GORD (the autoimmune disease side of acid reflux) but the year before that I started that journey to diagnosis. Both my gp & I thought it was coeliac disease & in fact I had a very strong gut feeling it was that but my original gastroenterologist had made up in her mind that it was just ibs. First blood test I had looking for the antibodies Indicating coeliac disease was <7 which is the starting indicator number for someone to have it. 3 months later I had the same blood test done and in that time in between the antibodies indicating coeliac disease had jumped to <78 well needless to say by the time because of having my second gastroscopy because of having coeliac disease & GORD I was so unwell because of it my previous gastroenterologist who did not handle my case very well at all told me the night of the afternoon I had the second gastroscopy told me when she did her round before heading home to not wait for the results but to go completely gluten free immediately. Oh and not to mention she never even mentioned I had tested positive for GORD as well but had to wait 2 weeks after the gastroscopy to be told about the GORD by my amazing gp so in other words after the not so great experience with the original gastroenterologist I have a new gastroenterologist now and she’s great.
    1 person found this helpful
  8. mocha delight
    mocha delight  avatar
    529 posts
    19 October 2021
    So yes I have dealt with undiagnosed health issues not even with having a strong gut feeling it’s not fun. And now I’m just working on getting the mental health issues diagnosed officially which pre coeliac disease & GORD I also had a strong gut feeling that I had depression (used to be only very mildly depressed I would say pre coeliac disease & GORD diagnosis) and I knew I would get to where I am now with my issues eventually later on down the track but I never thought it would be this soon which bullying issues in primary & high school & with most of the family on both sides but I feel like my previous gastroenterologist brought it way forward in time because of how very badly she mishandled my case.
    1 person found this helpful
  9. 44Max44
    44Max44 avatar
    166 posts
    20 October 2021 in reply to EC123
    I have gone through similar experiences myself and am currently going through a similar experience right now. I wish I could just go into the doctors and ask them to run every test possible on me because I think I have X & Y but I know that's irrational and probably a huge waste of time for the doctors. At this point I just don't know what to do. On one hand I don't want to inconvenience the doctors more than I already have, but on the other I don't want to let any possible health issues go undiagnosed and possibly get worse if they go untreated. It sucks. It really really sucks. There hasn't even been a minute in the past few weeks where I haven't been worrying about my health. I get to work and all I can think about is getting home ASAP so I can be miserable there instead of at work. I try to play videogames or watch shows/movies to take my mind off of it but I keep reminding myself that I'm only watching those shows/movies or playing those games specifically to get my mind off of my health, which subsequently gets my mind back onto my health. It seems like it's a never-ending cycle.

    I just wish I could get every test done, I really do. If there's some sort of full body scan or something I could get, I'd get it in a heartbeat. I just want to know if I'm healthy or not. I'm so sick of stressing out about this stuff.

    So long story short, yes, I have dealt with undiagnosed health issues before, both mental and physical. It's tough. I got through it a few years ago when I convinced myself that I had every health issue under the sun, so I can get through it again, and so can you.

    I wish you all the best.
    1 person found this helpful
  10. jaz28
    Community Champion
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    jaz28 avatar
    204 posts
    20 October 2021 in reply to EC123

    I am glad you're feeling more positive about it.

    You have to keep pushing. Maybe you could see another doctor for a second opinion?

    I saw two gastroenterologists and my second one is the one I stuck with (and two surgeons, cuz I have had some surgery for my IBD). So you can always see another doctor if you feel something still isn't right.

    Stay strong,

    Jaz.

    1 person found this helpful
  11. Sophie_M
    Sophie_M avatar
    5944 posts
    20 October 2021 in reply to mocha delight
    Hi everyone,

    We just wanted to let you know that we have seen the display error on one of the posts on this thread. We are looking into it, and hope to resolve it soon. We apologise.

    Kind regards, 

    Sophie M
  12. EC123
    EC123 avatar
    27 posts
    28 October 2021 in reply to Banksy92

    Hi Banksy92!,

    Thank you so much for your reply :) Goodness me that’s such a long time to be so unwell and go undiagnosed, I am so happy you have it all sorted now. You’re right, it definitely does take a toll on relationships unfortunately.

    Thank you for such kind words. It’s weird because I KNOW I’m not alone at all and there’s so many people in awful situations and situations like these, but I get so in my own head and isolate myself sometimes which makes me FEEL alone. Especially because I’m worried about Covid while being so unwell.

    Not knowing is difficult for sure, but I’ll take some of your advice and start planning little things that make me happy.

    Stay well! Thank you so much 😊

  13. EC123
    EC123 avatar
    27 posts
    28 October 2021 in reply to jaz28

    Hi again Jaz28!,

    Thank you for your continued support xx yeah I’ve seen another specialist and he’s ordered some tests for me and sent me to another specialist. It’s a bit of a whirlwind but if it helps me or rules things out then I’m happy to do it. Definitely have to keep on pushing. Unfortunately a person has mental health issues, especially if they’re going, and they present with an illness that is hard to find, it’s so easy to be dismissed.

    Thanks again! 😊

    1 person found this helpful
  14. EC123
    EC123 avatar
    27 posts
    28 October 2021 in reply to mocha delight

    Hi there mocha delight!,

    I’m so sorry to hear you’ve been through such a difficult time. It’s very easy to lose hope and feel like you’re going around and around in circles when you’re so unwell but not getting a diagnosis. I’m glad to hear your GP is amazing and her and the new specialist finally got on top of your issues. I think I have to keep on pushing, just like you did. As you said we know in our gut and within our bodies when something isn’t quite right, especially for so long.

    Thank you for sharing your story. Stay strong 😊

  15. EC123
    EC123 avatar
    27 posts
    28 October 2021 in reply to 44Max44

    Hi 44Max44!,

    Thank you for sharing your story, I definitely resonate with it so much. When you do feel unwell it can be really hard to take your mind off of it, can’t it. I have felt the same way. A lot of my tests have come back good (which I am so grateful for!), but a couple came back abnormal, and I’m still feeling quite unwell. It can be quite scary not knowing what is going on.

    I cannot tell you the amount of times I’ve just wanted to get all tests possible done (yes, including a full body scan) just to get this all solved. I’m so sorry it’s been hard for you, I know exactly the toll it takes on you physically and mentally.

    As other people have suggested on here I guess taking time to try and see people you love and so things you love is important, which I’ll try to work on to keep my mind busy while going through this.

    Stay strong and take care of yourself 😊

  16. jaz28
    Community Champion
    • Outstanding members who have volunteered their time to support others here on the forums
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    jaz28 avatar
    204 posts
    1 November 2021 in reply to EC123

    That's so true. I am sorry it is taking so long.

    Hope you find answers soon!

    1 person found this helpful

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