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Worrying Symptoms - Where to next?

Dzr
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Hello,

I currently feel stuck and afraid and I was wondering if anyone has been in a similar spot or has any advice on what I should do next. I am 35 years old, around 7 weeks ago I started to experience a continuous dull pain beside my left rib which is aggravated by movement. Symptoms have progressed from there:

Left Rib Pain, Difficulty Swallowing, Loss of Appetite, Weight Loss (I cannot stop this no matter how much I eat), Pale Stools, Dark Urine and a minor cough. I did have shortness of breath but this has resolved. The other symptoms and persistent, they do not come and go.

I have had the following tests done which were all clear:

Multiple blood tests including organ function, FIT test, H Pylori test, Chest x-ray, Abdomen x-ray, Abdomen/Pelvic CT Scan with Contrast and Barium Swallow.

My case was referred to the Gastroenterologist a month ago, I was red flag referred for an Endoscopy 3 weeks ago. I haven't even received an appointment date for either of these things.

I had a long discussion with my GP yesterday who is a nice guy but he seems fed up and has more or less said there's very little else he can do for me and that if anything was seriously wrong at this point he would be totally shocked. He also warned that if the Gastroenterologist looks at my case before the Endoscopy there's a good chance he will downgrade the red flag based on the number of clear tests and imaging I have had done.

Can anyone offer any advice on where I go from here? Whilst I'm happy I have so many clear tests, my symptoms are not resolving and they're really concerning me. I have been very open and honest with Doctors about all of this but it hasn't made any difference. I just feel completely hung out to dry.

  • Offline

     

    Hi Dzr,

    I can appreciate your frustration and worry when you are no further forward after all of these tests. The only thing I can suggest is to contact the Patient Advice and Liaison Service (PALS), which offers confidential advice, support and information on health-related matters.

    They will usually chase up things like this and might be more successful than you at getting some answers. You can find your nearest PALS office on the NHS website. You can also ask your GP surgery, hospital or phone NHS 111 for details.

    Please keep in touch and let us know how you get on. We are always here for you.

    Kind regards,

    Jolamine xx

  • Offline in reply to Jolamine

    Thanks all for the advice and suggestions. I spent most of the day Tuesday ringing various departments and eventually got through to the Endoscopy Unit who told me my Endoscopy is set for April 23rd. I wasn't rude but I did ask why it took so long when this was an urgent referral and they said nobody is being seen within the 2 week time frame due to backlog. 

    Sadly I think the damage has already been done. The only comfort I can take is that I did absolutely everything within my power to get ahead of this whilst I could. I have a wife and 3 little boys, my youngest is just 3 weeks old. I pray every day that I'm wrong about what I think is happening to me and there's some obscure non threatening illness that will explain all of what is going on. Will know for sure soon.

  • Offline in reply to Dzr

     

    Hi Dzr,

    I am glad to hear that you have finally got a date.

    I hope that you are wrong about the outcome. We all tend to think the worst case scenario at this stage, but i shall certainly join you in praying that you are wrong.

    Please keep in touch and let us know the outcome.

    Kind regards,

    Jolamine xx

  • Offline in reply to Jolamine

    Hello. 

    Just posting an update. Sadly, none of my symptoms have improved. I eventually did end up having my Endoscopy, the Endoscopist told me after she seen a Hiatal Hernia and some mild Esophagitis but everything else looked pretty standard. She said she did take Biopsies but it was more just for the sake of it and she did not expect anything to come of them.

    I would be really reassured right now except the point of my throat where I am having the difficulty swallowing seems to be just to the right of my Adams apple and the Endoscopist advised me that area is more for ENT to look at which really shocked me, surely the camera has to pass through that area to get to my Esophagus/Stomach? 

    ENT have already performed an 'indirect mirror examination' of my throat where the consultant reported no abnormalities and also a Barium Swallow which again was clear. I don't know if that is enough to rule out anything sinister but you'd hope so. I am just so fed up, with the amount of tests I have had done as well it's got to the point where no one is taking me seriously anymore. I could almost understand that if I had a history of health anxiety but back in February, I felt like the happiest guy alive I really had everything I ever wanted and things have just spiralled so quickly.

  • Offline in reply to Dzr

     

    Hi Dzr,

    Thank you for your update. 


    Have you seen your consultant since you had your endoscopy and if so, has there been any discussion of treatment for your hiatus hernia? This is certainly much better news than you were expecting and I hope that you feel reassured by it.

    The next thing is to see how treatment helps your symptoms. I sincerely hope that it does.

    Kind regards,

    Jolamine 

  • Offline in reply to Jolamine

    Hi Jolamine,

    Thanks for talking with me about all of this. It was explained to me that because of my Hiatal Hernia that my Esophageal Sphincter probably isn't working correctly so I was prescribed Esomeprazole, I have already completed a course of Omeprazole so I'm not hopeful.

    I would've felt a lot better about the Endoscopy except the Endoscopist told me she did not examine the area of concern in my throat. I just thought because you have to go through the throat to get to the Esophagus that everything would be seen.

    I have some more blood tests on the 20th and an ENT appointment on the 27th so I just have to keep going. I read some of my posts back on here and I realize I sound like a hypochondriac, I think I've ever lost the support of family and friends at this point but I just know deep down something is wrong. I hope I get answers soon.

  • Offline in reply to Dzr

     

    Hi Dzr,

    Many of us get braded as hypochondriacs, but we know our own bodies best. If you are convinced that something is wrong, don't just give up. You have been through so many tests, but I'm glad to see that you have an appointment with ENT coming up soon and that you are getting more blood tests done. I hope that these can give you more answers.

    Please keep in touch and let us know how you get on.

    Kind regards,

    Jolamine 

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