Hi, I'm currently counting down the days until my first appointment at the hospital since being referred by my GP with suspected Lupus. I went to one of the GPs at my surgery today as I was concerned at finding clumps of hair on my pillow , and they suggested I write this down on a list of symptoms that I want to mention and that I will only have a 10 minute appointment..
Is this right? I will have been waiting over 3 months for this appointment by the time it comes around and I guess I was expecting a bit longer to go through all my symptoms and to be given more information etc.
What happened at your first hospital appointment regarding Lupus?
Just looking for information on what other people have experienced so I know more of what to expect really .
Thank you in advance.
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Shaddix29
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I'm interested in this myself as I've been referred to rheumatologist and I'm waiting to be seen at the end of the month at a lupus clinic in hospital .
Yes mine was pretty brief. Handed my list of syptoms over, few questions asked and brief examination. She looked at bloods. To be honest I left none the wiser until I saw rheumatology nurse 2 weeks later to start me on hydroxy and then gave me copy letter which said I have mild SLE. I go every 3-6 months now and have regular bloods done. Appointments quite brief but I'm doing ok. Don't be afraid to ask questions. I wasn't even given a diagnosis face to face!
Sometimes the weigh in, BP and urine test (before you go in to see specialist nurse or consultant) take longer than the actual follow up consultations! 😵
Gosh, maybe its different but seeing one here in Australia and all appointments are 40 minutes long with full examination each time plus the series of bloods taken before that appointment so those results are in. We pay approx $132 out of our pocket to have this.
Good luck with your first appointment. I too have lumps of hair falling out and have done for a while. I tested positive for Lupus on a blood test at my G.P.'s in July and have been waiting for an appointment with Rheumatology clinic in my local hospital. My appointment came through the other day for 2 November so I will have been waiting 4 months. In the meantime I continue to get worse and take more time off work which is unpaid. The NHS system is in terrible crisis if we wait so long for our appointments.
Appointments are 5 to 10 minutes when I go every 9 months (which usually ends up to be 12 to 18 months). When I was diagnosed I had never heard of Lupus. The consultant handed me a photocopy of a leaflet about Lupus as she said she didn't have time to go into it. My follow up appointments they test my urine but never take bloods. GPs at my medical centre don't know anything about Lupus so there is very little support.
Good luck for your first Rheumy appt coming up. There usually 20 mins to half an hour to go thru your symptoms, medical history , family medical history and examination if required!. Subsequent appt's are shorter 10-15 mins or longer if needed!. It varies greatly!. You like to think that the consultant will give time where it's needed!.
I do hope it goes well and you get a diagnosis and treatment plan. Keep us posted. X
*this may be an actual transcript of my recent specialist consultation*
"...the first thing was when I was on holiday in Spain last June, July, late June really, last six days of June, first two days of July, so it was really hot they said the hottest on record or for twenty years or something and so I thought it was the sun but when I went indoors it seemed to get worse so the hotel man he said he had done medical training once you know in a hospital in London or was it Ipswich not qualified as such but still seemed to know what he was talking about and it was all kind of in lumps I think I have a photo on my phone look see here its no not there that's last week maybe just a minute its here somewhere I had it all set up to show you but wait this is it no that was last week that's my heel but not really relevant except I've never had that before so maybe that is relevant but give me a minute I will show you in a bit if I can find it so he mentioned lupus or rheumatic excema or something like that which got me thinking and he said to try some special cream that is a kind of steroid I think or maybe it was co- something or metho-something so I put that on and it seemed to get better but it stayed really red for weeks but my friend didn't get anything like that and she is much fairer than me, and she has IBS which is really bad and she knows about immune things she had it since she was two or three in school and everything so she said to try the GP after about a month oh yes, it was calamine you never see that now that always seemed to work when I was a child for sunburn and bites and measles everybody used it but I suppose it probably wasn't tested very much properly but I had terrible constipation that was why I went int he first place but she looked at it and said maybe I should try some antihistamines but they didn't have any at the chemist so the pharmacist suggested I should go back and ask her to look at my bloods to see if maybe there was something there so I tried asking next time that was about three weeks later because I had no time...."
Which may be why my initial consultations last about 20 minutes.
Seriously, though, at an initial consultation, I have often found that the consultant has a standard set of questions and procedures to get through. It tends to be pretty brief and to the point. I try to plan beforehand the top one or two questions/concerns, and ask them in a very pointed form. For example -"The thing I am most worried about is my shortness of breath. What do you think might be causing that?" And sometimes I go in and the first thing I say is, "What I most want from this consultation is a plan for dealing with my fatigue". The only other thing I insist on is leaving with a clear statement of the plan, so I repeat my understanding to the consultant before I leave "So you are doing these bloods to determine if I have active inflammation. You will write to my GP in about a week with the results and a treatment plan. I will need to ring the department after that to arrange a follow up with you in about 6 months. Is that right?" Most consultants seem to respond quite well to clear, bullet-point-type questions.
My very first appointment was extremely brief, with a registrar, just a general medical history, notice taken of extremely cold hands, then off to have bloods taken. A couple of weeks later I had an appointment to see an occupational therapist for hand braces. A month or so later i had an appointment to see a consultant, and that was followed by series of appointments to have a pulmonary function test, heart echo cardiogram and kidney function test. Then a nailfold capilleroscopy, with the same consultant who took more time. He wrote a prescription for "try this - hydroxy and naproxen" . I explained that I wouldn't be able to tolerate naproxen, and got a brief lecture on co-codamol causing bowel blockage. No mention of what I had. I subsequently discovered my new GPs talking about inflammatory arthritis and secondary Raynaud's. I had to change GP practice to get more information and better care.
So, on the good side, I had a very complete investigation of my internal organs, and the hydroxy, but apart from the Raynaud's it's "something auto immune".
I must confess that I had no particular idea why I'd been referred to rheumy. In my innocence I wondered why there was so much fuss about some painful swollen fingers. It wasn't until I looked up what hydroxy was that I had a better idea, joined this forum and learned so much more from others.
I think whisperits advice is very well worth taking. I just naively bumbled in.
Writing down notes and questions to take to an appointment is a great idea. Last year we published a blog article about getting the most out of your medical appointments which I hope you find useful: lupusuk.org.uk/getting-the-...
We also published a short guide on visiting your doctor which contains helpful tips and information that you can read here: lupusuk.org.uk/wp-content/u...
It's quite scary when first diagnosed. Sorry but I can remember my first time but it was over 20 years ago I have been to clinic about twice a year since with lots of different consultants over the years. Yes written is good as you think of something Wright it down. The times over the years have varied a lot but I have all ways had plenty of time to talk about what ever i have taken to them. Good luck
All comments are very interesting, I am waiting for my first appointment to see the Consultant on 2nd October so I will definitely be writing all my questions etc down before then so that I am "in control" so to speak and I will not be fobbed off at the appointment ! Hope all are keeping well 😉
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