New year, new challenges !

Well, I was happily reaquainted with my old Rheumatologist in December. It was him who diagnosed and very successfully treated me with SLE and Rheumatoid Arthritis until I moved to a different town. Over four years of attending this other hospital, I learned, to my horror how easy it is to virtually fall off the Rheumatologists radar. I am now realizing the potential consequences of poor monitoring and inadequate intervention.

Persistant symptoms were attributed to stress (I was constantly sent away after being told my desease was not active, despite my body telling me otherwise). Now, I have had more thorough tests, it is evident that active SLE, which has obviously been grumbling along for ages, has caused certain damage. Further investigation should indicate the extent of the problem, but I won't be too happy if it is significantly irriversible or could have been avoided with proper monitoring.

At least now I have peace of mind, knowing my consultant is "on the ball" and I am positive we'll get things settled down in the end.

All the best

Val

4 Replies

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  • Hi Val,

    Really glad that you have managed to get back in touch with your original rheumatologist.

    I have a similar problem in that my current reumatologist couldn't be much less interested in me as I am continuously uninteresting as far as my bloods and ANA go and last time I saw him I was feeling so unwell I really had no fight in me and just let him brush me off. So frustrating.

    I really hope no lasting damage has been done and that you are now going to be looked after properly again.

    Best wishes, jo x

  • Hi Val!

    Thank you very much for your post.

    It serves as a good warning to be one step ahead when attending appointments.

    It is so easy to sit there and just accept what is said to us, but we all know our own bodies and it may well be worth making sure that the doctors understand completely how we feel.

    I will be on my guard now!

    I am very pleased to hear you are reaquainted with your previous Rheumatologist and hope sincerely that you are ok.

    Margaret x

  • I can really relate to these comments. I am lucky to have a consultant who accepts my symptoms as signs of disease activity even when my bloods continue to look good. My main symptom is fatigue. I do know when I experience Lupus fatigue as it feels different to normal tiredness but it is such a ridiculous thing to explain to anybody - even a doctor! Sometimes I wish I had pains somewhere as this would make me feel more credible!

  • I am thankful to have a rhuematologist that listens and although it may take time, I am ready to do what I have to do to work towards recovery. I got dressed this morning, (the first time since Saturday). I am still very shaky, so won't be attempting to do too much just yet. I can't believe the extent to which the flares are knocking me out these days. I slept pretty much solidly over the three days. In my opinion, fatigue is more of a burden than the pain. It's depressing me that my trusty Lupus busting remedies are just not working for me right now. My son says I need cheering up. He is not wrong. Your understanding and kind words mean a lot.

    Thank you

    Val

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