Hi all,, need some advice as what to exactly ask at my first rhumy appointment tomorrow.
my list so far 1. can you confirm my diagnosis?, 2 if no what the hell is it, 3 what treatment can you offer, 4 what other tests do you think are required. anything else? many thanks, mark.
Sometimes good to go with a list of all your symptoms and if they say they can't diagnose, ask them to give possible reasons for each of your symptoms. This discourages them from giving you a blanket lazy sort of diagnosis that doesn't ring true or blaming it on mental health issues.
Good luck Mark!
thanks for the reply steadilymovingforward I have an illness diary, timeline of illness back from 1997 in chronological order, paper print outs of all my blood tests, ecgs, ct scan and lumbar punctures. I have also a full family history and medications list.
Mike my gp has actually sent this on prior to my appointment as its so detailed ( didn't know o.c.d was a symptom :P) as previously posted I am of the opinion that I have had lupus since 97, if they cant prove I haven't got it then I have. trust me they already know I am not for being mucked about with diagnosis after my brothers case with misdiagnosis, it cost him a year of treatment and rehabilitation, will not be happening with me.
Try not to swamp him with too much detail, otherwise he will switch off, just like any of us when facing an avalanche of data we need to process. If you think it is lupus, get the category list of symptoms from a reputable online site and then group your symptoms under the relevant headings. Then when you're at the doctor you just need to mention the headings and just hand him a copy of the detail behind it. For example, instead of saying headaches, tremors, numbness in leg or arm, etc, just say neurological symptoms. Same with hair loss, itchy scalp or rashes, those can be grouped into skin involvement. A diagnosis of lupus would mean you exhibit symptoms in 5-6 of these categories. Fatigue is a category in itself.
Try not to have too high expectations for the first consultation, you are at the beginning of a process of trial and error, so try to work with that rather than demanding a definite solution which might not be available immediately.
Good luck and let us know how you got on.
thanks purpletop, that's exactly what I have done, mike my g.p sent Dr Lovey an electronic copy around a month ago so just to be sure I am taking the file with me, I have also done like you said a synopsis of the main points and key headings so if she has not read it its all condensed on a single page, tomorrow will be a busy one, rhumy appointment in the morning, teaching the new doctors at 2 and then choir at seven, have the next day off and will be in bed 
sounds like you've got it sorted, all the best!!
At the first appointment, do more listening than talking. Lupus is often a tricky diagnosis. There are no definitive tests. You may go through several rounds of tests and the rheumy goes through the process of elimination. This is normal.
Lupus affects each person differently. If you take two patients with the same symptoms, one may respond well to a medication and the other will have no results. Often, treatment is a process of trial and error. Yes, it is frustrating, but that is the way it is.
When I was diagnosed, I asked my rheumy these questions:
Is it progressive?
Will I become disabled?
Will it kill me?
The answers??? We don't know.
After living with lupus for 10 years, reading everything I can, and going into remission, I now understand that there are no clear answers.
Hi, Lupus UK has a free fact booklet on the newly diagnised, and what to ask you doctor. You can download them from Lupus UK, reqd it off the net or request a hard copy to be sent to you. Hope this helps
Sometimes doctors are wary if you've done 'too' much research (they won't necessarily see you only did it because you had to) they will think you're obsessed and that gives them another excuse to assume things are in our heads. I just sort of casually listed my symptoms but made sure he knew that I had the main symptoms. Also, - the charm offensive. You have every right to be frustrated but the doc will just see anger alone and that's another excuse to say you're 'emotional'....Put on a bit of an act, even if he really pushes all your buttons try to keep an even pace throught the whole consultation - don't give em any excuse to jump to their favourite conclusion
Update, firstly thanks for the advice
well. saw Dr lovey at halton hospital and she is not sure 100% if it is lupus or not, her thinking is it is more likely to be post viral syndrome, but she admitted she could not rule out lupus.
I have been commenced on prednisolone and plaquenil and am for a review in 3 months unless im ill with the plaquenil. I feel more positive especialy as im now having some treatment for the blasted thing. on the whole a busy but good day, now for a rest then out to choir at 7, sleep day tomorrow
Don't worry, depending on the steroids dose you'll feel like superman soon! Well done.
So pleased to hear things have moved forward for you!!...really makes my day to hear you're getting the support you deserve
well have had my first dose of prednisolone and plaquenil, and have had a good day, may be the meds or coincidence but pain been reduced with normal cocodamol and actually felt like old self for most of today, then at teatime had a little tremor and headache episode but that only lasted an hour, and I am up at this time after working on the computer for the last 9 hours and been able to concentrate on it, not done that since last November so if that's what pred does for you give me some more
Wow 9 hrs, staying on any task for more than a few hrs is an achievement...that's brilliant!
after so long not being able to do much because I was either to tired, brain fogged or just could not be bothered I feel a lot happier, must go now work tomorrow on a 2 - 10 shift.
have a good day
What to ask immunologist
First Appointment with Rheumy 
First appointment at Bath, Lupus Centre of Excellence
First rheumatologist appointment
