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had my first rhumy appointment

617 Views 3 Replies 3 Participants Last post by  fiona88
HI just a follow up on whats been going on!
I had the rhumy on fri and he was nice. I took your advice and the doctors and went prepered with a list of symptoms and pics of my rash. The doc says the rash is an erythmatous rash ? Does this mean it is not lupus ? The rash has been all over my body but mainly on face ,chest, arms, knees and feet.
He said he wasnt sure what was wrong with me and took some more bloods! He also tested all my reflexes and movement and said I should attened physio which I have been to before and has not helped but I will try again. He said i was very stiff but I explained the stiffness is usually worse in the morning and has only been a problem since my flare up. I have not to go back till may but he did say my symptoms may be all non related or they could fit together but even if I do get a diagnosis they may not treat me! So I am just gonna take it as it comes and see what happens. I have been alot better latley but still getting pain today it was in my lower spine and my legs but I just keep taking painkillers. Thankfully I am back at work after 10 weeks to take my mind off the pain.
Thanks for reading my message
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Hello Fiona,
I am glad you are back at work.
I hope you get some results from your blood tests and can move forward with treatment.
x Lola
Hi Fiona,

It sounds like a reasonable first appointment and it's good you have a follow-up scheduled. Some docs dismiss things outright and don't want to see you again :rolleyes: It sounds like he is going to follow your symptoms and try and work out what is going on which is good. I'm not sure what he meant by saying even if you do get a diagnosis they may not treat you? That would be most unusual not to start someone on a disease modifying medication like Plaquenil.

Has anyone done a urinalysis on you? That's another important part of diagnosis as sometimes there are problems there that would count as criteria but may not necessarily be giving you any symptoms right now.

Erythematous means red in medico language ;) So at this stage he has at least documented it but isnt committing to what sort of rash he thinks it is. If things go on for a while without further committment from him then seeing a Dermatologist whilst your rash is very active and possibly having a skin biopsy might help in diagnosis. If the biopsy comes back positive you definitely have some kind of Lupus, but it can come back negative in some and it doesnt mean you dont have Lupus.

A tricky disease to diagnose in some, see how your bloods come back and keep documenting your symptoms and any further rashes. Will you get results prior to going back for your next appt? See if you can at least then you will have time to understand them and you might have some relevant questions for him. It will also be good to see what he has tested, that helps us to realise if they are being thorough in their testing and know what they are talking about.

Let us know how you get along.

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Hi lily thanks for your reply!
The doc took a urine sample for analysis when I was at my appointment so at least he is following that up. I dont know why he said I may not get treat ment even after diagnosis? Maybe he thinks its not lupus but I will wait and see what he says. I am hoping to go back to my gp in a few weeks so hopefully he passes on the results of the bloods to her and I can talk to her about it.
Thanks again
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