Undiagnosed conditions — Scope | Disability forum
Find out how to let us know if you're concerned about another member's safety.

Undiagnosed conditions

I was having severe pain in my upper right arm and at first thought it was a pulled muscle. Many weeks of pain later,  I finally was admitted to hospital and after two doctors at one hospital and X-rays/scans on my arm,I was told it was just a flare up from my Fibromyalgia. Well I thought this was rubbish as I get a flare up all over my body, not just one part of it . I asked for a second opinion and was moved to a different hospital where this doctor seemed to have more understanding. Unfortunately after all the tests were done and they couldn't find the cause, they e agreed with the first doctors. I asked them if I didn't have Fibromyalgia would they have came to this conclusion and that's when things got really frosty. They basically told me there wasn't anything more they could do for me and I should accept the diagnosis! That was five highly established  doctors opinions after all! I told them I would go home because nothing more could be done at this stage . I told them I didn't accept their diagnosis as they didn't live in my body 24hours a day and by this time the pain was so bad I couldn't move my arm much anywhere. Long story short , when I got home I was given an out patient appointment for the hospital and I saw another doctor. I had no hope by this point and he sat with me for about five minutes doing tests on my arm and he said at the end,"you were right, this is not Fibromyalgia in your arm. " He explained I had frozen shoulder all this time and couldn't give me an explanation as to why his colleagues missed it. I was quickly seen to be given a steroid injection through the proper muscles and within a couple of weeks I was almost pain free. I could have cried. Even after the first four months it hadn't came back so I didn't need a second injection  I know I will need more in the future but for right now I'm just glad to have found a diagnosis and something that eases the pain. Not all doctors get it right. Sometimes it's better to listen to your own body. I'd had Fibromyalgia for 15 years so knew better, but if I was newly diagnosed I fear I would have accepted their diagnosis and been living in years of  immense pain. 


  • SunshineLou
    SunshineLou Member Posts: 79 Pioneering
    @Sunsetsammy, unfortunately doctors are human too. They can’t and don’t know everything.
    i was misdiagnosed 4 years ago with viral Encephalitis but that turned out to be ADEM. The whole body paralysis would’ve been the obvious hint but they still didn’t get it to start with.
    My condition, as an adult suffered is about 1 in 4 million so that’s understandable. Yours however is quite common so not sure how so many Dr’s missed it.

    I also have a friend who’s sister now has numb legs.
    After 4 years they still can’t give her a diagnosis:(

    Again, they’re not God. I just look at it this way....if I lived in a different country I’d now be dead.
    Millions world wide don’t get any help. 
  • Sunsetsammy
    Sunsetsammy Member Posts: 2 Listener
    I'm sorry to hear about your misdiagnosis. I do understand doctors are only human but when you are constantly being told that they are the best the hospital have in that field, you start to doubt yourself,even although you know you are right. Doctors can be intimidating and when I tried to find a cure for it myself ,their demeanour changed from helpful to frosty. I was trying to ease the burden on everyone by looking up my symptoms and seeing what the computer came up with. Everything I asked them was shot down. I was told to accept it was my Fibromyalgia. I was so adamant that I had to stick to my instincts because six years previously I had been going to the doctors with strange symptoms. I was waking up from a sleep gasping for air and would have to stand at the window for ages till I got my breathe back. I would also wake up sometimes with sick in my throat or mouth choking and not knowing what to do for breath. It was horrible. When consulting the doctors he said simply that it was  panic attack. I've not suffered from this problem but he was the doctor so I took his advice although I said  I wasn't sure about that. Well two weeks later I was rushed in an ambulance unable to breathe, with swollen ankles,feet and stomach. They took blood tests and it showed I'd had damage to my heart. I was admitted and spent three weeks in one hospital with a diagnosis of Dilated Cardiomyopathy and Heart Failure stage3.  So because they thought it was familial all my family had to be tested. Turned out my mum,her brothers and my oldest son had it. While I was in hospital a savvy nurse noticed I wasn't my usual self one morning and kept an eye on the. I had taken a turn for the worse and it looked as though my heart was failing totally so I was transferred to the specialist transplantation  hospital . Luckily I recovered enough I was able to go home but life has never been the same since. So I haven't trusted doctors who can't come up with a proper diagnosis . 
  • jaxs
    jaxs Member Posts: 13 Listener
    sorry youve been tho this also ,,i have scleroderma ,,and a few other immune system diseases ,, i too like iur self have a very sore right shoulder it shoots pains to my elbow and in my shoulder 7 years now at times i have to physically lift and move my arm and now my left shoulder is paining too ,,, but some days i dont have a problem .
    i have had a scan and a ultra scan and nothing was seen so now ive got this pain in my shoulders and becoz i have had theses scans and nothing was seen i have to get on with it ,, but thanks you for enlightening me to the trapped nerve i will now go down that route ...
    yep doctors are human too ,, but get paid a lot of money to be paid to not do there job is criminal  !!!


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