Misdiagnosed ?

Hi. I apologise for how long this is but worth reading and has been pretty cathartic for me to write .

Last week I had a scan for kidney stones. Nothing there.

I was however lucky enough to be scanned by a consultant radiologist who was teaching a student doctor. During the ultrasound they pressed down on my chest and it hurt, this is nothing new for me as the same has appened in previous scans that I had 7 and 3 years ago.

Let's go through the history.:-

7 years ago I was admitted to hospital with this pain, doc thought it was gall stones. After much deliberation by consultants then they couldn't find anything and after 3 weeks sent me home with morphine and a visit to the pain clinic. The pain clinic basically told me docs couldn't find anything so it must be in my head, stop thinking about it and it will go away. I tried and although I still had pain I only ever mentioned it to my hubby.

4 years later I got sent for a kidney scan, this was due to having blood in my urine. Again she started in the middle of my chest pressing down hard as they have to. I told her this really hurt and her answer was because she was pressing on my ribs,of course it would hurt! Again no kidney stones , report came back clear.

2 years ago referred to rheumatologist for fibro/lupus. Got diagnosed as seronegative lupus. Fab at last someone beleived my overall pain .!!!!! Started on hydroxychloroquine and meloxicam, felt soo much better.

Now back to the start, remember my chest was hurting.......when the scan was finished he told me that the 6.7 fatty lump that was causing me pain hadn't got any bigger. What lump I asked, didn't know I had one! He then told me that it had been very clear to see in the scan I had 3 years ago!!! I was cross/ relieved and now confused. I then mentioned that 2 weeks ago I had a scan for a lump on my thigh which was painful and the one on my hand that didn't hurt. At those scans I was just told it was a fatty lump and may hurt because I might have knocked it.

At this point the consultant radiologist was starting to get excited and re scanned all the lumps. He the went to Google with the student doctor. After a few minutes they told me that they think I have something called Dercums disease. Dercums disease is extremely rare and in his 15 years I was only the 2nd person he'd seen with it. So what is it ? It is where you have fatty lumps just underneath the skin that hurt but it also causes fatigue, chronic weakness, brain fog etc at this point he kept reading the list of symptoms and every one ......yes you have guessed right, is the same as lupus!!!

I cried, tears of relief that after all this time I was right. There was something there causing me pain!!

So what now? I don't know. Got appointment with the rheumatologist on wed morning as had been feeling rubbish before this happened. Good timing!!!!!

Confused,annoyed, angry but also releaved that it's not in my head!!!!!!!

Will keep you all updated as I get more info. Thank for reading .

Mandy. Xx

3 Replies

  • Hi and erm kind of wow. That's good news and not so good news all wrapped up in one eyeopening day.

    So pleased for you that you're hopefully finally going to get the recognition and help you deserve.

    Here's hoping you get some symptoms relief asap and please do come back and let us know how you are getting on.

    All the best.

  • That's amazing!! Just goes to reinforce my view that doctors have no clue when it comes to rare diseases.

    Have you googled it, can it be resolved?

  • Ditto about the amazement and mixed blessing. Fascinated to hear about this - I think a friend of mine with RA might have been diagnosed with this too. Will ask her - I know it was something very rare that was part of her unusual seronegative RA. Wasn't it terribly fortuitous that you happened to have this consultant radiologist?

    I so relate to your experience of doctors telling us it's all in our head and also to pain when anyone presses even quite lightly on my chest for years. I think they assume it's RA or Fibro and call it costochondritis. But I have a high pain threshold abd I don't think it's these. I've had chest X-rays and nothing shows and now have blood microscopically in my pee so being referred to urologist to rule stuff out. Someone from this and the RA community wrote a wonderful letter to her former GPs about their dismissal of her synptoms.

    I've been lucky that my old GP took blood tests and diagnosed RA and referred me straight to a rheumy nearly five years ago. But ever since then it's been a roller coaster of uncertainty that goes with seronegative autoimmunity. It comes to something when we are told we have a disease and are euphoric with relief that it's not in our heads. But actually, if this was all in our heads, then they should be taking this as seriously as a clinically diagnosed physiological condition. Sending people to pain clinic is all very well for those who's paib has been formally diagnosed but for those of us with idiopathic pain then I feel passionately that they should trust us and keep investigating until the cause is found.

    Now I must learn more about your Dercum's Disease. I really hope there are effective treatments you can access and wish you loads of luck. No one should have to feel so relieved to be diagnosed with a rare disease. Maybe you could write to the doctors eco dismissed you to try and stop them doing this to others in your situation? I think it might be cathartic and productive if you feel it could help. Tx

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