no close to a diagnosis.....

So I saw my rhumy today after not seeing him since feb - I noticed on my letter he had requested to see me on a ward where they treat you so I thought I was going to be diagnosed finally... Unfortunately not. No idea why he requested to see me there, didn't get no answers after being ill for nearly 2 years now, he cant treat me with anything as theirs nothing to diagnose me with as apparently the only constant high blood test is my ANA. He doesnt want to diagnose me with lupus as apparently theres not enough 'blood evidence' to say I have it and doesn't want to go behind one of the professors back who said I dont have it - He wont be seeing me now for another 3-4 months which will take me to sept/ocotober time!! I can not wait that long again to just be left!!

I explained to him for the past few weeks iv constantly had flu like symptoms feeling generally unwell and seem to be very bad in the sun with my joints & muscles. He didnt seem to listen and thinks I should be excersing more. Im only 22, 8st 9 (not fat) gained abit of weight from being ill but I explained to him theres people out there who dont excersie and dont have symptoms I do, so he cant blame silly little things like that.

I am thinking I should go and see my GP and ask to be refereed to someone else.... If anyone knows any good rhumys in Birmingham who they can recommend that will be great

[Hidden]

I have children your age and really feel for you Leanne. All I can say is that your rheum surely knows something is occurring or he wouldn't see you again in 3-4 months. If he does treat you now with a drug such as Hydroxichloraquine or steroids then there's a risk these could mask things and make proper diagnosis much harder. I've been left on "watch and wait" several times and it was really hard but it was worth it to get a proper diagnosis in the end. I'm not saying that this is what your rheum is doing but it does sound a bit like that to me.

How high is your ANA do you know? X

[Hidden in reply to Hidden]

Thank you- it is very hard for me, espically my mum to, to see my struggle so much at this age.

I was on steroid injection and hydroxychloroquine but had allergic reaction. I have been tested for everything to rule out other stuff, ms, Lyme disease, hepatitis everything you can think off.

My ana has always been 400, it did go up to 1600 but then went back down to 400. Hasn't been lower or higher since.

[Hidden in reply to Hidden]

It must be very hard. I had an allergic reaction to Hydroxy and two others and failed to tolerate Methotrexate. My old rheum kept hedging as well. It's taken me years to get the right diagnosis. Hang in there!

[Tinythepanda]

Sorry to hear you're having a rough time.

I can highly recommend Prof Gordon at City hospital. She runs the lupus centre of excellence.

I hope you're able to get a firm diagnosis soon.

[Hidden in reply to Tinythepanda]

I have saw her she wouldn't diagnose me as I didn't have photo evidence to back up what I was saying

[Fennella02 in reply to Hidden]

I was at her clinic for several years. Despite being antibody-free and asymptomatic at every appt, she was still able to confirm SLE/uctd. Unfortunately, I saw a different doctor at each and every appt which was very bad for continuity. At my last appt there, I saw a lovely consultant called Dr Carruthers who made it clear that he believes that people with auto-immune diseases are so complicated that they do not always fit into standard boxes of diagnostic criteria.

I agree with Hidden , your Rheumy would have quickly sent you back to your GP if he were sure that you do not have an AI condition. He does seem to be watching to see what evolves. Diagnosis, unfortunately, can take many many years. 3 or 4 months between appts is nothing in the world of rheumatology.

[Ccupcakes]

Hi Leanne22p

I concur totally with Clareb67, I am treated by Royal Brompton in London, when I asked about the 'Lupus like' symptoms with confusing blood results, my consultant told me that just sometimes patients have what he described as a 'smell' of Lupus, almost all go on to develop clinically diagnosable SLE but it's a waiting game, Lupus can be so complex and unpredictable because the disease can play on a person's individuality, no two patients are the same.

Certainly I present differently to my sister, so I can understand what he's saying, it's one of the reasons it can take a long time to firm up a diagnoses.

I'd like to think this is where you are at, and not just being fobbed off.

Good luck and try to be patient, I think.

C.c xxx