Crossover symptoms

I have been diagnosed and treated for sle for over 18 yrs now. On my last clinic appointment, having become very down about sores on my face, I asked to see someone about it. Having been prescribed Azathioprine, I was told I would receive an appointment with a nurse specialist to discuss the medication prior to going on it, and an appointment with the skin specialist. 2 appointments arrived, both for the same clinic and neither specified which was which! The first was quite soon and turned out to be with the nurse specialist so I assumed the next ( a 6 month wait) was for my skin. I attended that appointment this week only to discover it was to reassess me because I have a "crossover" of symptoms and don't have enough "points" for each illness to define myself illness. I found this confusing and upsetting. I have now got to undergo numerous tests and was told a definitive diagnosis isn't really important unless you're doing clinical trials. Well it's important to me, and I'm assuming importantif I decide to be brave enough to apply for a PIP. Also for my life insurance? Sorry for the long winded tale but this has really affected me. Does anyone else have the same experience. Any words of wisdom? Many thanks x

5 Replies

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  • I started experiencing symptoms about 18 month ago and also have a confusing mix of symptoms. Each time I see my various consultants, or see a letter from them to another medic, the label given to my condition is different. It hasn't made much difference to my treatment, but there is a potential financial issue because I am currently applying for retirement on ill health grounds. I think (hope) I will be OK because I have made this very clear to my consultants when asking them for letters and reports. So hopefully, even if the diagnostic label isn't impressive, they will be clear enough about my functional limitations to impress the assessors.

  • It's very frustrating isn't it? They may be a confusing mix of symptoms, but to you and I they're very real. Very best of luck with your retirement, hope you get the positive result you deserve

  • thanks - you too x

  • Hope you get better 🙏

  • So kind of you, thank you x

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