[LadyLily]

Hi - I'm new to this site and also new to the idea of possibly having lupus. I've got an appointment with the rheumatologist on Monday and I was wondering if there are certain things I should be asking.

My story is that I was diagnosed with Juvenile Rheumatoid Arthritis over 25 years ago at the age of 16 when I had joint pain and swelling that would jump from joint to joint and a rash over my body. I was very ill at the time and also had liver and kidney failure. I was very lucky and survived this and after a couple of years on steroids had no particular further problems . . . until my mid-30s when I had miscarriages and infertility. Blood tests came back showing a range of problems - I had a high titre of ANA, was also positive on anti-DNA and anti-Ro and complement levels were also abnormal. I was referred to the Miscarriage Clinic at Paddington where they were totally brilliant . . . I eventually got pregnant, took aspirin and have a lovely little girl. However, I think now that the bloodwork was overlooked - it said on one of the reports to refer to a Rheumatologist but this never happened - I now know that because of the anti-Ro there could have been a possibility of foetal heart block but this was never mentioned or tested for . . again I was lucky.

At the end of April I had a flare-up - the first for over 25 years - and I had joint pain and swelling all over accompanied by the same old rash which lasted for just over a week. I've had tests done through the GP and these came back positive for antiphospholipid antibody syndrome and the lupus anticoagulant was also positive. I am also always anaemic despite taking iron tablets from the doctor. As I say I've got a referral locally to see a rheum. specialist - I know it's dangerous to self-diagnose using the internet but from what I've read, I am strongly suspicious that I never had JRA and it has actually been SLE all along.

I'd be very grateful for any pointers as to what I should be asking about - although I'm now officially 'over the hill' we'd still like another child and I know that a lupus diagnosis could affect the way this could be dealt with. Any other ideas for me? I've only just discovered this website too so would appreicte any other tips people can give me.

Many thanks,

Lily

 

[Maia]

I would just arrive at the appt well prepared and let the doctor do his medical review, history review, and exam. You can prepare for the appointment by writing down your medical history, bringing with you copies of old bloodwork if he is unlikely to have them there, and bringing a symptom list for things presently happening as well as in the past.

Be sure to bring a list of questions you'd like to have answered too; undoubtedly others will come up after the appointment but it is so easy to leave an appointment without getting questions answered if you fail to bring that list especially!

Good luck with everything! Let us know how it goes

 

[Clare.T]

Welcome to the forum

It is difficult to know in advance what questions to ask as it often depends on what happens at the consultation. Most often the questions come at the follow up appointment because the doctor usually runs all tests again plus some that the GP might not have done, and many will not pronounce or prescribe until then.
Important questions at a first appointment are practical ones about what happens next ? Will there be a follow up and when. Will he be writing to your GP with test results and recommendations. How can he be contacted if need be at any point.
You do need to be well prepared with your list not only of relevant symptoms but all health problems ever. You could do two lists in chronolgical order and dates, one for health history, and then an abstract for the possible lupus/APS ones. A note of medications taken in the past and more recently can be handy. They will often ask about that.
Make a note of chronic health problems of close blood relatives.

It does no harm to have two copies, one to hand to him. Mostly they ask extensive questions and make notes of what interests them most

Don't wear nail polish because they should look at hands and nails which can have important disease signs.Take off any make- up when you get there. Wear simple easy to get on and off clothing.

I also suggest you take a note book and make notes of anything interesting. Then as the appointment draws to a close say Let me check I have got this right and briefly run through them. If meds are prescribed get how they are spelt if you don't know and run over the dosage recommendations and for advice how and when to take them. Ask about any side effects or check ups for side effects that might be needed.

Most good doctors welcome well informed patients.
What they do not like is people who have convinced themselves they have such and such disease. This introduces a confrontational dynamic.
If you are asked what you think you have, you can certainly say It looks like it might be something like APS and lupus. Or, my doctor thinks this is a distinct possibility.

I hope the appointment goes really well.

Let us know how you get on and ask here for any help we can give you.

Bye for now
Clare

 

[LadyLily]

Maia and Clare,

Thank you both so much for some very useful advice. I will sit down over the weekend and go through everything - there's masses when I think about it which of course I've always put down to being 'one of those things' but perhaps could be interlinked. The flare I had at the end of April has made question what has been actually wrong with me over the years - I thought the autoimmune problems were over and done with and in the past but I'm having to re-evaluate that thought right now. I remember having a strange result for a special lung x-ray I had to have when I worked as an English Language Assistant in Germany- they were convinced that I'd had a major lung problem and wanted to send me back to the UK but there was nothing that I knew about and so I managed to convince them to let me stay - they were concerned about TB but I'd been vaccinated at school against this - perhaps I should mention this? The other things I was wondering whether to mention were depression and bulimia in my 20s which seem to have morphed into panic attacks through my 30s to date - should I talk about these too?

I've got copies of some of my bloodwork done in 2002 but not all - I had to give the anti-dna results to my doctor at St Mary's as he didn't receive a copy of that from my GP. My current GP (who has all these results in my notes) was unwilling to dig them out for me - should I mention that they have this to the rheumatologist or will s/he just order up a whole new set of tests anyway?

Lily

 

[Lily]

Hi Lily from another Lily :bigsmile: welcome to The Lupus Site!

I'd definitely mention the lung thing to the Rheumy, even if you were unsure what it was all about, he may read some significance into it or not, but it's worth mentioning.

The bulimia and the depression in the past I would probably hold off on (unless specifically asked about it). That's just me though and from past experience it's not something I would bring up at an initial appt. I guess that reaction comes from so many of us not being taken seriously depending on what the doc is like. Mind you once I got to a decent doc they scoffed at the former label I'd be given of severe PMS and rightly so............since when does it come with a malar rash and all the other problems I'd had.

I wonder if your GP's secretary would be more forthcoming with digging out the copy of the DsDNA result (and any others you don't have on hand)? You can always tell the Rheumy past results but seeing as it's such a specific test for Lupus then it would be handy to have proof positive you had this in the past. Even if it isn't positive when he retests you. He will run a lot of tests initially and also a urinalysis, they like to do their own, and things can change rapidly with Lupus and similar diseases.

Good luck and do let us know how you get along.

love
Lily

 

[LadyLily]

Thanks for those tips - I am amending my list to play down all the depression/panic attacks stuff . . . I don't want the doctor just to think 'oh no, here comes another crazy woman!' I have listed out the test results I have got - it was the admin staff at the GP's who were too busy to dig out my old results for me - they haven't even given me a clear copy of the blood tests I had done at the end of April but since the rheumatologist is in the local hospital here where the blood tests were done, s/he should be able to access all the recent stuff.

I'm feeling a bit apprehensive about tomorrow actually as I've lived with the idea of just having had Juvenile Rheumatoid Arthritis for so long that it seems very strange to think it could be something else but it does explain so much if it is! I will report back afterwards whatever the outcome although I'm also prepared for the fact that I may get no definite answers.

Thanks for now,

Lily