So they want to change my diagnosis again!

Today I had my six monthly review. A very nice man who very apologetically said "I don't think you have Lupus as a primary".

Now just a quick background.(sorry for those who have heard this). Seen by a local Proffessor in 2000 with initial joint issues and shaking fever. Diagnosis: RA.

2005 I didn't think it was RA as no progression and now had other problems, intense migraine, rash, food allergies. heart problems, continual cystitis, IBS, dry mouth, ulcers. etc asked to be tested for SLE. Result ANA positive. Referred to London Bridge. Rheumy, after looking at history, family and full medical, confirmed SLE with Sjorgrens.

Now;2017, add seizures ,hypothyroidism, soft tissue involvement, cataracts, photosensitivity, blood in urine, haemolytic anaemia, positive ANA and DNA markers.

I asked why he thought I didn't have SLE and said that would be wonderful if I didn't feel like I did and he said I did hit enough of the criteria.

Now I don't mind what name my condition is given as I still feel the same, however, its chicken and egg. Lupus, Sjorgrens, or Sjorgrens Lupus, what does it matter.

7 Replies

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  • It's a worry Jo. It's my biggest fear that I will go for a Rheumy appointment and be told I don't have Lupus. Daft isn't it. Under normal circumstances you'd welcome it. But not us lupies.

  • I just wish they would agree. How can I not hit enough markers? I would prefer to not have any of it. How can the doctor from Guys say yes and another say no?

    It certainly doesn't change how I feel or that I am now walking sideways in the mornings, hence new neuro appointment.

  • Rheumatoid diseases are notoriously hard to diagnose. But Guys are an excellent teaching hospital with a good specialism in lupus aren't they? (it was only when I asked to be transferred there that I got a proper diagnosis for my sero negative spondyloarthropathy)

  • I agree. I went there first as my husband had health car attached to his work. They now wont cover me as I have a diagnosis. So I was transferred to a local hospital. My treatment hasn't changed but I don't understand why they are now changing the diagnosis.

  • I'm feeling your pain Im sorry you've got so many problems heavens above and here's me moaning about not much. Too complicated for my brain size but lots of love xxxxx

  • Thankyou. Any symptoms are tiring. It becomes more difficult when doctors become a hindrance.

  • Of Course. Its a big deal to us. Its all about how we process on the next step. Xxx

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