First Rheumatologist appt done and dusted - LUPUS UK


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First Rheumatologist appt done and dusted


I've been there, done that and now waiting to get the t-shirt ;)

I think it went OK - I feel the real test will be my next appt in 3 months...

She did listen to me, examined me, sent me for blood tests (ESR CRP liver and renal functions) and for an x-ray of lower spine and hips and told me she would see me again, so that was all good - I wasn't dismissed immediately.

The rottweiler husband forgot to remind me to get out my notes so I have now remembered that I did not mention the weight loss, the loss of most of my pubic hair, the rash from sunlight... oh dear :(

On the plus side, I did mention the facial rash, the cold extremities, the dry eyes and mouth. I saw her write down Raynauds and she mentioned Sjogren's and spondylitis. She asked if there was any family history of AI disease "like lupus" so I did get in that my dad does not produce tears, my maternal aunt has lupus, my nephew is coeliac and my maternal cousin died aged 7 from juvenile RA.

All in all, I am OK-ish with how it went and have told my husband that the battle will possibly start if/when those tests come back negative. I will also coach him more vigorously before the next appt. I told him to record it on his iphone - do you think he did?!

The husband has said that if we don't get anywhere we will look at seeing a rheumy privately for a second opinion, so I feel like I am getting a bit more support from him as well.

In the meantime she has given me Naproxen and Omeprazole. I did say the pain is not the worst thing for me and I don't feel that much pain but husband kept saying it is agony (it's not! It can wake me in the night but I feel uncomfortable rather than in real pain I would say). So I managed to say that I didn't think the pain was the major problem for me. She has only given me 250mg dose and told me to take it for at least a week if I get pain. This is hard for me. I don't even take paracetamol - if I do everyone knows I am in absolute agony!

2 Replies

jnnmum - sounds like you done good! But as you say, this is the start of what might be a long process. definitely do the recording next time. Hope it goes well x

jnmmum in reply to whisperit

Thanks whisperit !

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