What questions would you ask at your 1st (suspect... - LUPUS UK
What questions would you ask at your 1st (suspected) lupus/sjogrens consultation? What is vital to know and what should they be telling me?
Make sure you get a copy of any blood test results so that you can google them. You should also ask what they mean, of course, but my experience was that it was all too much to take on board and I couldn't keep it in my head.
And consultants often don't give you ENOUGH information. So get everything you can about the pathology etc and then add to what you are told by using the web.
I'm sure other people will have lots of sensible questions you can ask - but this is the main thing I can think of.
Hi MaggieS, thank you for responding.
What do you mean by 'pathology'? Is that test results?
Yes - the clinical signs of illness - yes, the bloods, urine samples, whatever else they do.
The thing that always gets me is that I know how I feel - and 'they' only see these test results. It seems that the only person who can connect how I feel to what is going on in my body is me.
When is your appointment?
Appoint on Nov 6th.
I
have already had an appointment with one consultant but only ever saw 2 different registrars, one of which was unbelievably bad. She didn't like being questioned and gave short answers and was even evasive. I left confused as to what they actually thought I had, scared after she told me she didn't want to frighten me but it could affect my brain and so very angry that I was treated like a number to get through on the list. I complained to me GP, did some research to find out who the main lupus consultant was in my area, emailed her private office and asked what I needed to do to see her. I took her advice and my GP helped by doing all I asked him to do. Thus, I see the expert in 2 months.
I want to be fully armed with every possible question when I see her. I am also going to refuse to ever see a registrar again!
What a horrid experience. I don't think it can be universally true of registrars. I expect she was learning and not very confident - but in that case she ought not to have been left alone with a new patient. I'll think of anything else I can.
When I went back for my blood results in 2005 I was told it wasnt rheumatoid arthritis as my gp had diagnosed but SLE....I'd never heard of it....She assured me it wasnt life threatening and that it was controllable, that was enough for me. I was convinced I had cancer as several family members have suffered the big C, some have died. I dont need a lot of medical details, not my thing at all. The doctor gave me a leaflet that was very helpful, I read it and so many things fell into place, I just needed to know it was under control and I left the hospital that day, a weight lifted from my shoulders.
I came unstuck when my brother asked questions, he liked details even when he doesnt understand them....When my mother was very poorly he asked so many questions that I told him to call mums neurologist, which he did and he got his answers...sorry I'm not a lot of help but I hope you get all the info you want 
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