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The *undiagnosed* symptoms are back!

Posted , 5 users are following.

CoffeeQuartz
CoffeeQuartz

Hi all,

I should preface this by saying I do have a diagnosis of fibromyalgia. But the symptoms I am having seem a little unusual for this and I suspect RA - hence my posting here.

Last year I started to have severe pains in the joints of both thumbs and in my toes, with inflammation in my feet and hands (red, hot, sore) , swelling in my feet, ankles and hands, lots of strange burning pains and was fatigued beyond anything I had ever experienced before.

I went to my doctor and was sent to a rheumatologist. I got a bone density scan (NOT an MRI) and bloods done and it all proved to be normal.

I started having symptoms like dry eyes and had a parotid biopsy done to check for Sjogrens. It was negative. I was discharged back to my GP. It was recommended I get tested for Lyme disease and I sent off blood to Germany. This came back positive for one thing related to Lyme and indicated my immune system was "suppressed." My doctor has been trying to get me to an infectious disease doctor and I am supposed to have an appointment privately soon. I am nervous about spending this money as I know the results from Germany can be considered controversial.

I was doing better for a while there but now the joint pain has come back again. It started in the joints in my toes and the next day it was in my left thumb then my right. My hands are also slightly swollen.

The rheumatologist I went to said there was nothing rheumatological going on but I don't know...

My doctor is giving me Vimovo which helps a bit. But I am worried it might mask something that could help me get to the bottom of this.

I have spent so much money trying to get an answer and relief and I barely make the living wage. I'm not sure which avenue to go down any more.

I really could do with some support and any advice or encouragement would be so greatly appreciated.

A.

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0 likes, 5 replies

5 Replies

  • AlexandriaGizmo
    AlexandriaGizmo CoffeeQuartz

    Posted

    Hi I don't understand why you are paying for tests yourself and why it was up to you to have bloods sent to Germany to check for Lyme's disease.

    Is it because you are not UK based.

  • Jayjay1959
    Jayjay1959 CoffeeQuartz

    Posted

    Hi

    II have heard on these forums that you can have negative blood tests for RA but still have the disease

    However it's not a suppressed immune system that causes it but it's the opposite you body rejecting your joints

    The treatment is to suppress your immune system

    Have you asked your doctor for a course of steroids see if it helps

    • CoffeeQuartz
      CoffeeQuartz Jayjay1959

      Posted

      I had asked my rheumatologist about trying a course of something to test if I improved. She told me that wouldn't help as there could be many reasons why I would feel better, and that this wouldn't help me get a diagnosis...

  • CoffeeQuartz
    CoffeeQuartz

    Posted

    Not sure how to edit my posts or if I can...but I realised I said I got a bone density scan. I actually got a bone scan with the radioactive material.

    x

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