So Down in the dumps right now :o(

Hi All

I went to the doctors this morning to get the results of my ANA test, and they have come back negative. I know I should be pleased, but I just want some answers.

I have been having aches and pains, severe exhaustion, blood spots, rashes on my feet when I go in the sun, very painful feet and hands, extreme hair loss, heart palpertations, mouth ulcers and just generally feeling terrible and completely worn out :o(

My sister has lupus and has been diagnosed with it. I have all the same symptoms, but the result came back negative?

At least I have an appointment for a rhymatologist for 9th October.

My question is ... will he be likely to find out what is wrong with me?? are there other illnesses that carry the same symptoms I am experiencing? is there another lupus test that can be carried out?

I am at my wits end .... I just want to know what is wrong with me.

Sue x

24 Replies

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  • I know it is so frustrating. When I was under investigation the even did tests to rule out leukaemia. No one could understand when I was disappointed by a negative result. It wasn't that I wanted leukaemia - I was just so desperate for an answer it didn't matter what the diagnosis was. The not knowing was the worst thing ever.

    I have been diagnosed but my mum who has similar symptoms but to lesser degree has not been. I think drs are loath to label us with a disease because they feel the implications of the label are huge. My dr only diagnosed when it became life threatening. My mum's isn't so I have wondered if they are more frightened of wrongly labelling such a complex disease than giving us the answers we desire.

  • Thank you Davros

    You are so right ... it is not that I want Lupus, I just want some answers :o(

    All the doctor would say this morning is ... "yes, you definately having something wrong with you" ... seemingly her text books are 10 years old, so she is not up to date on the symptoms of Lupus, and just said ... the Rheymatologist will give you the answer.

    I just feel so frustrated that it has gone on for sooooooooooo long.

    I have been going back and forth to the doctors for years ... they have treated me for tennis elbow, I have had numerous cortisone injections in both elbows, then I got told I had painful arc (i couldnt lift my arms above my head)

    I was then told I had osteo arthritus in my neck, back and shoulders.

    I was told the joint and tendon pain I experience in my feet, hands and other parts of my body are related to the osteo arthitus.

    I just think there is more to this than meets the eye.

  • Aww big hugs to you hun, I can totally relate to what your going through as I am still undiagnosed! I have just had my bloods repeated but have not got results yet. My last ones where negative but my first ones where slightly raised. Been having bad flares for over a year now but when I think back I've been having symptoms since I was a teenager (am now 23). Things have got worse since I had my son 4 years ago. Last year I went to gp to complain of tiredness and aching and he checked my iron and B12 levels (as I had suffered with aneamia through pregnancy and for over a year after) but they came back fine so gp just said I was stressed and left it at that. I went back a few weeks later as was still experiencing symptoms but he still said it was stress (even though I did not feel stressed). I just left it as symptoms eased off. I now think that was a minor flare up. My rhuemie has said it can be a long process to get a diagnosis but I know how you feel that you just want an answer. Nobody would wish for Lupus but it is so hard to not have an answer and to feel like your going mad!! Hope you get an answer soon. Takd care xxx

  • Thank you Megs, just out of curosity, how long have you been seeing your rhumie ?

    what other tests do they do to check for Lupus, other than the ANA one?

    Sue x

  • hi weather66

    I have lupus and aps syndrome...but it has taken 3 years to be diagnosed and now all of sudden my bloods are showing really high titres of ds-dna and ana along with raised esr etc my advice is just keep pushing your rheummy, ask for an ultrasound of the affected joints i had this and in showed tendonitis and inflammtion in my hands and wristsbefore my bloods showed anything...although this is not a diagnosis if there is joint damage showing on ultrasound they are more likely to pursue a diagnosis more agressively, i am now at the stage were i am being investigated for internal damage to my serous membranes heart/lungs etc which had the diagnosis come earlier i could have been on the right treatment and possibly prevented any damage. I think doctors hold back on making a lupus diagnosis unless it is backed up by indisputable blood tests. if its any consolation i know what you are going through and you know your body and the symptoms you are suffering, what medications are you on it might be worth asking if you can trial using some of the recognised lupus meds to see if they help with your symptoms

    take care

    Jani

    x

  • I have been seeing my rhuemie since about January. I have had two appointments and one telephone appointment with him. The last blood tests done (prior to the one I am awaiting results for) I was tested for; auto antibody profile (CTD), ENA, dsDNA, C3 and C4. I have no idea what these are but just going off what is written in my letter from rhuemie. Think he tested for more this time round but the letter was lost in the post and I am awaiting a second copy to be sent out. Hope this helps a bit. I notice you have said you are taking amitriptyline. How do you find them? I was taking them but they made me very drowsy. I am now taking dosulepin, which are less drowsy but to be honest do not help wih the pain (though this is due to the fact they are not anti-inflamatory in my opinion). Xxx

  • Hi Jani,

    I am currently taking Ametripline and co-dydramol

    In all honesty last week from wednesday to current, I am having a better time of things, but going on past history, I know it won't last.

    Also, just one other question.... does anyone suffer from rashes on their eyelids??? this has come up recently on me and is really sore... I have it on both eye lids

    Sue x

  • Hi Sue, I know this post is a couple of months old, but just saw it. My first big flare (pretty sure I had others before but doctors never recognized) started with my eyes. First one then the other within a few days, eyes red and weepy, lids upper and lower swollen and burning, itchy red. Had to be very careful touching eyes as skin was ripping easily. The rest of my face soon caught up, but not as itchy, and then my neck and chest. It took 2 months before an ANA was finally done 1:320, and then three months of Prednisone to get rash under control. The rest of my body has had it's fair share of attention as well, legs today - neck and shoulders tomorrow, but I know I have it easier than a lot so far. What I have recognized is that when ever I start getting headache around eyes (the skin starts to feel bruised, even trying to put eyeshadow on hurts), it is time to take a break and get rested up. I have had ANA above 1:1280 down to negative, most 1:320, but negative on specifics. When negative, Rheumi wants positive to diagnose, when positive he would rather go with symptoms - which of course he doesn't see on that particular day. I just keep trying to convince myself that a diagnosis "Lupus" would only give a name to my symptoms, wouldn't make it go away, so just treat what is here today. Sorry got carried away, just wanted to respond to your eye question.

    Chapter

  • Hi Chapter

    Thank you for writing to me.

    I have another appointment the end of this month, as I am really really struggling now.. it went away for a bit then come back with a vengance.

    My eyelids are constantly cracked and bleeding, and even if I don't put make up on, it makes no difference.

    The letter the Doctor has sent me and my doctors surgery, states: Fibomyligia with Lupus syptoms?? seems a bit of a wierd diagnosis.

    I had to have a cortisone injection in my arm yesterday as it got to the point where I was unable to lift a cup of tea ...

    I want a magic pill that I can take to make the aches and pains go away and make me feel normal again x

  • For me the magic pill was Plaquenil. I started taking that at same time as Prednisone, but it took several months to kick in. I do not feel like my old self, but looking back now, that is not necessarily bad. There are a couple of days a week where I feel sore all over, intermitant headaches, sore but manageable eyes, and most days by supper time my head is starting to burn (like getting a bad head cold, but it never comes). What I don't have any more are: arms and shoulders to sore to comb own hair or dress myself, getting up 3-4 times a night to pee, heart palpitations, regular UTI's and headaches all day. There are still symptoms and I do not fool myself that I am clear of the worst, but I am OK. I really feel for you going through the sore eyes, in all I think that was the hardest for me, especially since my doctor had no idea what it was. Mine lasted months, but it did go away : )

  • My doctor said the Lupus test came back clear, but I am having all the symptoms ... some days I just want to go to sleep and never wake up, I am that tired and exhuasted of life.

    When I raise from a chair I have difficulty walking and stairs are a nightmare.

    I am still working full time which is absolutely draining me, but I don't have an option, it is work and survive (mortgage) or don't work and loose my house.

    Oh well.. moaning is never gonna make me better .lol sorry for moaning xx

  • Hi Megs

    The ametripline made me drowsy at first but I persevered with them, and to be honest I feel a lot better being on them.

    The drowsyness wears off after a time, I have been on these for 3 months now, and can honestly say they are definately helping me and help me to sleep too, as the pain was waking me in the night.

    The blood tests that were done on me were: HLA B2, DR2, DR3 and ANA ... I have no idea what these tests were for, but she said that they come back clear

    Sue x

  • Maybe I should have perserveered (sorry not sure if that is spelled correctly, dam brain fog) with them, but I just struggled so much getting up and as my son has just gone back to school and I am due back at university in 2 weeks, I could not afford to be struggling to get up as I need to be up and out! I found that after a week taking one it was not having the same effect so I began taking two. I became worried that this would just continue and spiral out of control. This was another reason for wanting something different. The dosupelin where helping me sleep but last night I was awake for hours and was so uncomfortable and aching :-( hoping it was a one off!

    I'm not sure what those bloods are either, don't find that they are really explained to me if I'm honest. Xxx

  • Aww I am sending big (((((hugs)))) your way I know exactly how you are feeling it took them four years to diagnose my lupus, and all I wanted to know like you was what was wrong, at one time I even thought I was going crazy and becoming a hypocondrite ( spelling ) but I knew there was something very wrong with me, whne I finally got the diagnosis from the second rheumie I saw I could have kissed him, I wish you well when you see the rhumie x

  • Thank you Jenni xx

  • I hope you get sorted with your tablets Megs and good luck at Uni xx

  • Thank you. I'm dreading going back but got to be done. Take care Xxx

  • Hi, I have the same problem as you. I have a positive DLE result from biopsy, but a negative SLE result. I saw the rhuematologist yesterday who said "I shall call it condition X - as something is not right but I just can't tell you what as the ANA is negative." I feel if I could get a diagnosis people would stop thinking I'm a fraud. At the end of the day I don't think there are benefits to being labelled, it propbably makes thing a lot harder. In my mind it just identifies that I am being truthfull, I'm not work shy and not after anyones sympathy, Sometimes I just feel like death! I am going to keep on going, I do feel that there must be exceptions to the ANA test. Perhaps we are it! On a final note, my daughter has very similar symtoms to me and is also unable to get any further with tests being negative all the time.Keep going and good luck.

  • Thank you Nelly... I am so glad people understand my frustration.

    I don't want Lupus, but if I do have it, at least I have the answer to my problemss

    I am praying that the rhuemy I am going to see on the 9th October, is a good one, and does not try and make me feel like a fraud!! ...

    Thank god I have a very supportive hubby :o) x

  • I av been under rheumy since dec, only had my 2nd app this sept, I too am suffering from pains in most joints...fatigue dry itchy skin on hand n feeds etc.....I have been on naproxen for pain relief.....all bloods keep comin back normal, apart from antibodies? Rheumy puttin me on planquil . They stil av not said for def it sle? So am stil in limbo? Not knowing why u feel the way u do, is the worse !

  • Hi Cazz

    It's horrible isn't it :o(

    My general doctor has said to me "The rheumatologist will give you the answers" I bloody hope he does ... sick of waiting and not getting anywhere.

    If they have put you on Planquil, isn't that the drug for SLE???

    Lets hope we all get some answers soon xxx

  • Huge Hugs.

    There just are not enough specialists in the UK.

    Plus LUPUS is known as " The Big Mimic" as the symptoms can be so varied from M.S. To ME.

    The most important support you need is from your GP.

    It was 5 years before I got 2 positive blood testd for SLE & a four month outbreak of Discoid Lupus prior to a biopsy to confirm.

    All seem to be talking only to Rheumatoligists...why haven:t your GP's suggested seeing a Pain Specialist ???

    I was on diclofenic for the joint swellings and pain for over 5 yrs.....not monitored. 92 ulcers cauterised later and I am now unable to take any working anti-inflamatries.

    Get a gteat GP and keep asking for referals and 2nf opinions.

  • Hi Fiona

    Thanks so much for responding... I havent got too long to wait now :o) only 3 weeks ..

    I have also had 4 good days this week which is a huge bonus ... actually feel a more like the old me :o) ... I don't expect it to last though, as I have had it before where I feel good for 1 week and then feel poo for the next 5 weeks ... I can normally tell how I am feeling when my feet touch the floor in the mornings ... and so far its been good.

    I have said to my hubby, maybe its gone for good?? but I don't want to get my hopes up. I won't be cancelling the rhemys appointment anyway, just incase

    Sue

  • I've read that the average time to diagnosis of SLE is about 4-6 years. I was sick at least that long with symptoms that came and went. Had started to think I would only be diagnosed at autopsy! There is such a thing as ANA negative lupus. I have a friend with severe lupus but never a positive ANA ... go figure. One thing that might help is to note your symptoms on a calendar and keep up with them. Take calendar with you to doctor so that he/she can see pattern. Hang in there!

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