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Hi i'm new here.

My Rheumatologist said i suffer with undepreciated connective tissue disease and i suffer with Pericarditis, episcleritis, Myalgia, Gout,, Raynauds, irritable bowel syndrome, Tiredness really bad and lost eight kilo's in 6 months.

I have bilateral narrowing of the spine in the c3/c4 and c5/c6 and c6 c7 . I also have quite marked degenerative changes in my thoracic and lumber regions,In my right ankle i have tibialis posterior tenosynovitis and tendons gone in both legs.plus tr igger finger and lots of other ailments

A friend who has lupus suggested that i could have lupus when he read the letter from the hospital because it said that i don't think there will ever be a clear surgical option for him.

Thank you for your patience

6 Replies

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  • Hello fayno1,

    Although you may not have a diagnosis of lupus (SLE), i wonder if your rheumatologist actually said that you have "undifferentiated connective tissue disease"? That is an auto-immune disorder which is very similar to lupus, and the basic treatment is the same.

    I'm sure you will find this forum very helpful.

    Mx

  • Thank you whisperit

    No she never gave me the impression it was similar to lupus. In fact i thought that it was only a minor annoyance so nothing to really complain about. In fact i only fond out i had arthritis when i was rushed into hospital suffering from a heart attack only when they inserted a stent into my heart that it found i was suffering from pericarditis. Only recently reading all your post's about Lupus do i realise how much similar i am to you. I may not have all the typical lupus signs but i do get fevers really bad cant stop shaking juvenile growing pain's. Chickenpox internally having two lumbar punctures and a crown fitted in my gum my body rejected it and caused a abscess to go right through my sinuses.

    Thank you

  • Sorry to hear you have had such a rough time. I dont have a diagnosis of lupus, but a whole variety of different labels, including Sjogrens syndrome, mixed connective tissue disease and Overlap Syndrome.

    The range of symptoms that people with lupus and lupus-like conditions have is endless, and it often takes people years to get the diagnosis right. I'm new to this, and I'm sure you will find better help and advice from others here. It might be worth your while looking at the Lupus UK information sheets to get a good overview of how to get a diagnosis etc?

  • Hi whisperit.

    Yes i was diagnosed with undifferentiated connective tissue disease and my medication is tramadol and pregabalin for pain viscotears liquid gel for scleritis hydroxychloroquine and allopurinol for gout and glandosane synthetic saliva spray. would it be because it is similar to lupus is the reason the operation's were cancelled because i did have a pre op.

    Thanks

  • I'm afraid i can't help with your question about ops. I guess the best person to ask would be the surgeon/anaesthetist?

  • Hi there,

    I am sorry to hear that you are experiencing all these issues.

    If you are not satisfied with your current treatment and diagnosis, you might want to get a second opinion from a lupus specialist. We can provide you with the details of specialists in your area and you can contact me at fabienne@lupusuk.org.uk