taking too long to diagnose, do I or don't I

My list, pernicious anemia, underactive thyroid, joint pains (rhumatologist says poss connective tissue disorder), fatigue, headaches, hip pain, and quite a few more all of these vary in intensity at different times. I also had a positive rhumatoid factor and some other positive blood test? I asked if i had lupus as it had been mentioned to me on one visit and i had been placed on hydroxychloroquin but my rhumatologist said he wont say lupus as that would change my life, i just wish i could change my life I'm so sick of being poorly and not knowing what is up with me. How long do I have to wait its been over 2 years now. Please can anyone help

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  • not sure if knowing you have lupus or not knowing you have lupus can change your life it wont make you feel any better regardless .l dont think other than pain relief for your disorders can help .did you have blood test done for ANA and DNA if you did they should ask about all your symtoms and be able to tell you if you have or have not got lupus .

  • i had positive ANA. Last time i saw clinic i was told we should call it connective tissue disorder at this stage, he didnt want to label me with lupus just yet, what on earth does that mean? Sorry I sound like I'm ranting but i feel so confused. I do manage my pain with painkillers and cope as best as i can, its just dragging on now without a real answer and i feel so stupid when i have a bad bout and people say whats up with you now and all i can say is oh just the usual and feel i should just soldier on,

  • Generally doctors don't want to give somebody a label of 'lupus' too early because many people have overlap conditions, but once they have a lupus diagnosis, every symptom tends to be attributed to lupus, rather than considering alternative causes. This means that you will have a more complete diagnosis which should result in more targeted treatment and better management.

  • with all the symptoms you have and the positive ANA they should have come up with lupus but l think its the goverment that stops them making a diagnosis ,l have sle lupus and take allsorts of medication .l do not know what its like to have a good day ,but suggest to your doctor with all your illness,s and blood test can you tell me its not lupus ,because you have all the symptoms of lupus and it would make it easyer for you to no ,as its playing on your mind and its making you feel worse ,,it may be a good idea to read up all about lupus before you go back to clinic and write down all the symptoms you have because they want 5 or more then they should say yes or no to lupus hope that helps .

  • So frustrating for you. It's good to have a diagnosis as it psychologically helps you deal with your symptoms etc. There can be a negative as discussec below. You say you've been started on hydroxychloroquine which is a first line agent for treatment for Lupus . There are obviously many more but I think he is possibly seeing your response.

    Being labelled or given definate diagnosis of lupus can be negative in some ways too as everything can be written off as 'being lupus' when sometimes it is not. I often say to my GP take Lupus out of the equation what else could it be.

    I remember being first investigated for lupus/being ill and being frustrated like yourself as the symptoms seemed endless but slowly one by one were they solved / treated. At the time it seemed like for ever but they will get to the bottom of it. Keep a diary of symptoms and always ask questions. I say to family/friends when I am poorly that my immune system is playing up. Similar to an infection for ease of explanation.

    Hope you get some answers and feel more settled over your illness/diagnosis soon.

  • having lupus is life changing. i does not really mean anything. in that most drs dont know how to treat you and benfits that help people with say cancer will not help us. its a curse having lupus it really is.

    rather than help me more with my symptoms and the terrible pain my drs feel i need anti depressants i need support and real help not more pills really fed up. i hate my life and i hate having lupus. eery single day i wake up in pain and live it.tyring the plaq even though it made me so ill last year but i dont want to go on the harsher chemo type drugs.

    lupus is no mans land that no man wants to go to!

  • Tin tin......no mans land is the best term ive heard for lupus,i feel like i live in no mans land ,lonely ,isolated ,progressively disease is gettting worse ,day to day living is a marathon ;( and like you plaquenil made me very very unwell ,so what other ways can we slow this disease down?

  • Hi,

    I too have been told I have UCTD - they don;t want to give me the lable of Lupus at the hosp... If I'm honest I don't get it - How will THAT change my life (it wld be just the same but knowing??) but going forward with knowledge...

    Altogether I have found the Hospitals and Dr's there uninterested/unconcerned - my GP has been fantastic and sooooo helpful.

    xx

  • is not dr's uninterested/unconcerned they ignorant of condition so just plainly don't want to.Also why do docs try and treat people when they obvis not got a clue then try phobe u off with bulls*** x

  • hi hun

    Just wanted to say im in the same boat....I have a positive ANA and Graves disease and no definite diagnosis for whats wrong One appointment they said its connective tissue disease and the next they are not sure. Nothing else is howing in my bloods. Im taking hydroxychloroquin and Azothriprine and still not feeling better.Im worried they wont be able to give me anything else and each day it feels its getting worse then better

    xxx

  • Hi, Yes to be honest if having a label won't help then why oh why do they call it lupus in the first place. I do understand why they can take up to two years to establish if it is lupus (if it isn't entirely clear) as I guess with auto immune it isn't easy. However, like a lot of us in this post after this time (and probably for a good year before) we really know ourselves. Our body hurts like never before/we have flare ups, joint pain, fatigue, infections, inflamation.......and it is clearly affecting our whole body (ie systemic). More than anything our life changes....we take on less, we can become more isolated, we feel like we are an island (well apart from others on this site).

    I still think there seems to be some way to go for quicker diagnosis than is presently occurring. I think it is this that needs to change. Waiting years for a diagnosis may seem ok for rheumys, because in itself we can be like mini projects and they can watch and learn how a disease unfolds over time. However, the main issue is length of time to diagnosis.

  • Thanks for all your comments, I agree with you too mstr, I only see the rhumy either every 3 or 6 months it has all depended, this time last year I took with me a picture of a human outline and coloured in all the areas I was having trouble with and went to the trouble of labelling it all, it looked like something off art attack but still he can't put a label on me, I agree sarahjane13 that having the label could be a problem too, but at the moment I feel like a fraud at times when they can't actually say what is wrong with me. It is good though to hear from so many people going through or having gone through and still struggling the same and different problems as me, I feel a little less alone

  • Lupus is a bitch 2 correctly diagnose, I know of people who have waited near on 10 years 4 a positive & correct diagnosis, even when they've all most of the criteria & bloods. I know it doesn't help u but the fact is there is no definite test 4 lupus & as it mimics everything else it can b notoriously difficult 2 diagnose some1 correctly. Imagine if they DID say u had lupus & then just when u've started 2 accept things & get u're head round it decided that their diagnosis was wrong? U have 2 try & remain positive (as hard as that is) & make sure u r firm with them as generally, when they're unsure, they'll try & fob u off with this, that & the other. I hope u get some firm answers soon.

  • I think - if I gave them my body TODAY....

    They'd be banging on doors - begging to understand/know what was wrong with them...

    Can hardly move. It use to scare me - now I'm acepting that days are like this - weeks are like this - this is me now...

    :) xx

  • Lupus is difficult to diagnose as it can be confused with other similar illnesses. In my personal experience I was diagnosed with 'mixed connective tissue disorder' and placed on Hydroxychloroquine, then after almost 2 years the final Lupus diagnosis was made based upon the consistent indicators. My medication was then changed and the spiral began.

    Being tagged with Lupus has had positive and negative effects, and I have been blessed with supportive GP and consultants, but in my opinion the single most important thing you can do for yourself is accept that you have the health problems, whether Connective Tissue Disorder, Lupus or otherwise, and adjust your life accordingly. Myself, and I'm sure many others like me, are not able to live the lives we had prior to diagnosis and the medication malaise. If we try, the implications are generally more severe than the original indicators were in the first place.

    Its hard, being ill sucks, but if you can accept it and adjust your life to deal with it, you may feel better in yourself in the long run :)

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