No firm diagnosis but I don't really mind

[grannyjogger]

My first rheumie sent me for lots of tests (MRI, ultrasound, X-rays and a load of blood tests), started me on Plaquenil at my next appointment, then steroid injections into my shoulder joint. I really felt I was getting somewhere after 3 appointments. He felt it wasn't RA (which was suspected at my original consultation with my GP). He explained some of the other avenues he wanted to explore including getting to the bottom of my eye problems. This rheumie left and his replacement contradicted everything at my next appointment in December, brushed aside every symptom I raised, told me I had RA. When I asked about the butterfly rash on my face (which incidentally has been much better after 7/8 months on Plaquenil), she again brushed this aside with a comment, "It's not Lupus just a Lupus type rash"!!!??? She then suggested I stop taking Plaquenil "to see if it came back". When I asked about a new problem, extreme pain in my right hip, without looking up from something she was reading she said - that's just Bursitis. Contradicted so many other things that I left the appointment feeling utterly deflated. Last week I phoned the rheumatology support nurse for advice. She went through my notes, said that I had undifferentiated autoimmune disease and explained that so many immune diseases have similar symptoms but the treatments are usually the same at first. She also explained that in time the condition could develop into one or more of the immune diseases. After that I feel much more positive. I may not have got the diagnosis I was hoping for but it doesn't really matter. I will deal with the symptoms as they arise and see what develops. In the meantime I will read everyone's posts because there is a wealth of shared knowledge out there and that helps a lot.

[Barnclown]

Great blog post! Admire your realism and determination. Your experiences and your attitude to them encourage me big time to keep on keeping on & on, one step at a time, managing my condition/s and the medical types I have to collaborate with...thanks granny jogger!

[Shanti]

Hi like your up beat attitude and agree with you about the wealth of knowledge on this site, it has been a great help to me on many occasions just to read what others are struggling with.I hope you get the help you need, keep positive luv, I'm a granny.but not a jogger I admire you for that. If you want to talk give me or one of the lovely helpful folk on this site the thumbs up, am sure someone will help, I don't think they will mind. God bless.

[purple-lou]

I can understand your frustration with doctors.

I spent all day yesterday convincing myself I was a fake. Conflicting opinions are so confusing and disheartening.

I admire your way of thinking.

Going to give it a go! Xx

[tintin49]

its an odd thing having lupus every dr wants to see something different. my gp told me after i was diagonsed without any doubt all my tests every single one and my symptoms were lupus that as far as she was concerned i did not have it just a vit d deficiency.

its not just giving someone plaquenil but treating all the other symptoms relating to lupus. extreme pain whch is constant,depression and some of the treatments are very horrible. when we have to put up with ignorance from drs who are there to help us.

its hard having lupus and for me its the prejudice that come with it

[Sher78]

Unfortunately I personally believe that until they find a definitive test 4 lupus or set one list of criteria that EVERY1 agrees on, we're always gonna have this problem. My current Rheumy (despite me being diagnosed with all my fabulous conditions nearly 19 years ago by a Consultant who specialised in lupus) still, even now questions the diagnosis of some of my autoimmune illnesses, despite me showing all the various signs etc (and despite the fact I have positive diagnosis' by NOT just my old Cons, but by Haemo's etc as well). In short, my current Rheumy is very young, very inexperienced & a bit of a jumped up little tosser at times but hey, I give him as good as I get & luckily, have a decent team of specialist/GP's behind him who have no problem going over his head anyway lol!

I'm really pleased that although u don't have the diagnosis u were expecting, u have some sort of diagnosis & r feeling much more positive. I think half the battle is getting some1 2 listen 2 us & sometimes, we have our minds so set on a certain outcome, that sometimes, whether it's correct or not, we can't seem 2 accept a diagnosis of anything else.

[Purpletop]

Even if you don't have lupus but another connective tissue disorder, I'd have thought Plaquenil will still be prescribed, particularly when it takes so long for it to work. Stopping just to see whether symptoms return sounds a bit adventurous to me but what do I know, I'm not a doctor.

As for the 'lupus type rash', you could suggest she sends you to a dermatologist for a skin biopsy, that will show whether it is an autoimmune rash or an eczema, say.

[grannyjogger]

Thanks for all the positive feedback. Although I'm feeling pretty upbeat at the moment, woke this morning with uveitis in my right eye, after two weeks of steroids in the left eye to clear uveitis I get a flare up in the other eye - It was one of those for **** sake moments. Very tired, fingers stiff and painful, could have been a bad day. Then my daughter popped in with my beautiful 8 week old grandson. Hey, life's good.

By the way, welcome back Sher78, hope you're OK.

[Sher78 in reply to grannyjogger]

Thanks gj, I'm rocking & ready 2 roll ;0)

[letslaugh63]

I also like ur attitude.i've got 1st app for rheumy (not til april) and would like to thank everyone on this site cos although I will be a bit nervous im not going in there blind.i have a learned not to expect answers/diagnosis straight away.trials and errors and to be bamboozled by tests,lingo and to be very patient(this 1 hardest for me) and mostly to stay positive.just hoping at some point to name this thing interfering with my life.thank you x