First appointment looming ahead

Dear all, this is my first post and as you can probably tell from the title of this I am pretty new at lupus! ! The first time I had heard of lupus was actually only a couple of months ago when my husband and I started watching the House Boxset ( yes I'm a few years behind ) and we had a running commentary during watching it making a joke at the beginning of each episode that it's not going to be lupus.

I was shocked when the locum doctor said that she wanted to test me for lupus when I arrived with a widespread rash around my neck and arms. I was also told that the permanent blush wasn't just my colouring but a classic butterfly? (Ps I am scared of butterflies and moths) Fast forward a couple of weeks and I was told that the majority of blood tests were boarder line but anti dna was abnormal and I was referred to a rhumatologist .... I was told to take photos of the spots so I have a phone full of yucky pics!

So my appointment is on Monday 27th June and I would really appreciate any advice you in respect if what I should expect. ...

Do I need to take anything, how should I dress (will they need to examine me?)

Do I mention previous undiagnosed things like the pancreatic pain (nothing found on scans etc) but get pain everyday and have done for 3 years now?

Do I mention that GP thinks I have folliculitis? Despite not clearing up after wks/month's of treatment and suffering on/off for 2 years now (so embarrassed by this the rash/sores are unbearable most of the time lately) might this be lupus related?

Do I mention the ear canal skin infection that I've had for well over a year? Could any of this be related?

Thanks for reading, any advice will be greatly appreciated,

J x

12 Replies

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  • Everything is worth a mention, that way he can put it all together and decide where to go from your symptoms, he may even refer you to other departments, for their expertise opinion.

    I got diagnosed by having pancreatitis twice and had never heard of half the auto immune diseases there are. Yes, he may want to examine you, depends on your symptoms as to where he will have a look. My appointment these days are the neck,chest and hands, sometimes the stomach and ankles. If they think you may have other overlapping immune symptoms they might do some tests. Usually do blood and urine tests.

    BUT it's nothing to worry about, best to get it all checked so that it doesn't get worse over time. Good luck for tomorrow, one piece of invaluable information I was given was if possible take someone with you as you don't always remember what your being told. X

  • Yes,yes,yes tell Rhemy everything. Go to the lupus UK website & start reading their leaflets today, you might recognise other things & include these.

    Write everything down, it's easy to forget when you are there. Then simple tell him/her that you have a number of long term issues causing you pain that the Dr has not been able to solve and ask if he/she thinks they may be related.

    Ooh and keep reading posts in this forum, you pick-up a lot of useful facts & it helps you stay connected to other sufferers.

    Best of luck,

    Sarah

  • Hello Jewel

    You've got some great replies

    All I can really add is a suugestion that you click on this link to a great recent discussion here about prepping for consultations...in this discussion there are links to several PDF charts that I've found v helpful when I'm preparing for consultations:

    healthunlocked.com/lupusuk/...

    Hope you'll let us know how you get on

    πŸ€πŸ€πŸ€πŸ€ coco

  • Afternoon coco,

    I was just going to mention clicking on your profile and back posts as you have put some amazingly helpful chart/template stuff for appointments especially for the new to this folk.

    Can you remember your first real lightbulb appointment?

    Wish this forum had been around years ago

    Xx

  • πŸ˜‰πŸ‘­πŸ‘­πŸ‘­πŸ‘«πŸ‘­πŸ‘­ don't know how I'd have managed without you allπŸ‘­πŸ‘­πŸ‘«πŸ‘­πŸ‘­πŸ‘­πŸ‘­....

    And, oh boy YES: do I ever remember my first real lightbulb appointment: what a GREAT question, effie‼️‼️‼️‼️. you could start an AMAZING thread with your question....I don't remember any posts concentrating on the angle: WOW, what a POSITIVE & encouraging thread that Could Be:

    Can you remember your first real lightbulb appointment?

    Over to you!

    πŸ€πŸ˜˜πŸ€πŸ˜˜πŸ€πŸ˜˜πŸ€πŸ˜˜

  • Thanks.

    Yep I remember mineπŸ˜€

    Could be a good thread but how'd you fancy posting it?PLEASEπŸ˜†

    I am having a full on FOG brain moment and going another ten rounds with the Auto correct is likely to see meπŸ˜•πŸ˜€πŸ˜ πŸ˜’πŸ˜‘ 😣before I can get it correct without having posted and then editing half of it.

    Apart from that I know youll put it all so well.Xx

  • πŸ˜‰....will do....soon...meanwhile: take care πŸ€πŸ˜˜

  • Ok thanks.

    Just saw Mandys post and took forever to do her reply.Hope she going to get checked out and be ok.

    X

  • Me too! πŸ€πŸ˜˜

  • Thanks everyone for your great advice I will let you know how I get on tomorrow

    J x

  • Hi Jewel79,

    I hope that your appointment goes/went well. As others have mentioned, it is a good idea to discuss any currently unexplained symptoms that you may have. With a systemic condition, two seemingly unrelated symptoms could actually be connected.

    Let us know how it goes/went.

    If you need more information about lupus, we have a free pack which you can request or download from our website at lupusuk.org.uk/request-info...

  • Well just got in from my first appointment and not sure what to think....

    Been told that he wasn't sure if it was or wasn't lupus. Said the blood tests alone couldn't determine the diagnosis. Been told to log everything - how I feel, spots, aches and pains until next appointment in 6 months time!!

    In the meantime he is booking appointment with dermatologist and took blood tests and urine test today.

    So no further forward!!

    J x

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