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Quickly worsening symptoms while waiting for tests.

mrwh1ppy
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Hi all,

I was under investigation for a long time for autoimmune disease like symptoms. This all took a long time back and forth until getting to see the rheumatologist and being told I had no autoimmune disease.

All this time my symptoms have been constantly worsening the worst being swelling, painful lymph nodes that are now causing pain throughout my neck and head. I am waiting for an MRI and biopsies but it is all taking so long. I have been waiting months since this all started and my weight loss and worsening of symptoms will not slow down.

I feel as if I need to be in hospital, I cannot eat and have lost about 10kg in the past 6 weeks. I am in constant pain and the fatigue is unbearable. I am scared because I feel as if I need medical attention now, I am withering away but I just keep getting told to wait until my next scan etc.

I am certain at this point that something is extremely wrong but I don't know how to get the help I feel I need as my "obeservstions" keep coming back perfectly fine..

Has anyone else had experience with this?

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    Hello mrwh1ppy, 

    It's a shame that your MRI and biopsies are taking so long and in the meantime your symptoms are getting worse. If you feel you need medical attention now, and it does indeed sound like you do need to talk to someone, you could try and get a second opinion. Even though your observations keep coming back fine, you are obviously not feeling fine and feel that you need to be seen by someone. It is worth talking again to your doctor about it or if you feel you are not getting anywhere you could ask to talk to another GP. If things get really bad and you feel you need urgent medical attention, ring 999 or 111 for out of hours medical advice. There is also the option of being seen in A and E if you feel you need urgent attention. 

    I hope you manage to get the medical help you need and also that you get to have your MRI and biopsies very soon so that you have some proper answers as to what is going on. 

    Hopefully you will hear from others on the forum who have experienced this before and they will be along to share their story with you. 

    Best wishes, 

    Lucie, Cancer Chat Moderator

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