Hi there, I'm new here and confused πŸ™„

Hi there, I've just joined this group and my story goes like this, my dad had full blown lupus but sadly passed away 16 years ago at the age of 79, but in 2002 I was diagnosed with undifferentiated connective tissue disease, they didn't know then if and what it would become, I managed to have a normal life except when I would get bouts of fatigue that would last anything from a few days to weeks but would pass, I learnt to manage and pace myself then 6 years ago I became ill  with debilitating fatigue and muscle/ joint pain which has got worse over the last 18 months I was told at the time it was fibromyalgia, I have now had to give up my career of 25 years. I have recently seen a rheumatologist again and have had a whole batch of fancy blood tests looking for active autoimmune disease, I have received a letter which starts by saying

'She has Lupus Serology with positive ANA at 1:640 and positive role, she does not have extended lupus serology in terms of double stranded DNA' 

All  the other tests have come back normal. 

Can anyone please tell if it looks as though with this result I might get a diagnosis of Lupus, obviously I don't want Lupus but I know I'm ill and would rather have a firm diagnosis of Lupus and get some treatment than to be stuck in this place that feels like 'nomansland' and left to struggle. The rheumatologist did mention maybe going back onto  plaquenil which I had taken when I was first diagnosed with UTCD.

I knew I had a positive ANA and RF but at what titre it was back in 2002 I don't know, I have not been tested for Lupus since that time although I had a positive test for it and then a negative result which is why they put me in the undifferentiated category.

I have so many symptoms and struggle everyday with joint/muscle pain, bad Raynauds in my hands and feet,chronic migraines, puffy painful hands, overwhelming fatigue, constant excruciating mouth ulcers, palpitations and last year my kidney function rapidly declined but has now improved ? NSAIDs induced, some days can be slightly easier to get through ( which gives me hope) but not many.

It's going to be ages before I get my follow up appointment to discuss this so any help/advice would be really appreciated.

Thanks

Diane 😐X

10 Replies

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  • Hello diane & welcome...you've come to the right place...when I was at a similar point in my life (decades of dodgy health, progressive multisystem debilitation, early retirement...😝) I found lupus uk & this forum: it was like landing on solid ground after a shipwreck πŸŒŸπŸŒŸπŸŒŸπŸŒŸπŸ‘πŸ‘πŸ‘πŸ‘

    The situation you're describing is hard, to put it mildly.  And many here will be relating to it big time while reading your post.  I'm sure you'll get some good replies

    Having read your post, I'd expect that if the rheumatologist you're seeing is experienced in immune dysfunction & connective tissue disorders, you will be taken on by the clinic and the process of diagnosis & treatment will begin.  This process is usually a collaboration between you & your rheumatology clinic, with feedback from the other clinics you are attending for the diagnosis + treatment + monitoring of your multisystem conditions.  

    Some patients can wait 7 years for firm confirmation of a particular autoimmune condition diagnosis.  My SLE diagnosis was firmed up within 5 years..and by then my combined therapy treatment plan was helping me feel better in my early 60s than I had since me 20s (it turns out, I was diagnosed with Lupus as an infant & teen, but no one told me & the diagnosis got lost when I moved to the uk @ 21)

    I hope something in there helps

    Wishing you all the v best

    Hope you'll keep us posted

    πŸ€πŸ€πŸ€πŸ€ coco

  • Hi Coco,

    Thank you so much for taking the time to reply I really appreciate it and I'm so sorry that you've been through so much over such a long time, you must be a pro at dealing with healthcare professionals πŸ‘πŸ», I'm learning to not just accept everything they say but to challenge things.    I spoke to the rheumatology secretary and she is sending me copies of all my results as I'm also seeing an endocrinologist next week and I want to go fully armed, hypothyroidism keeps cropping up when I'm researching, I also have a friend who was diagnosed hypo last year and struggles with what seems to be 'fibro' symptoms , so I asked my gp to check my thyroid function tests. ( I already have a multi nodule thyroid) getting T4 & T3 was a struggle as they only test your TSH here, they came back normal but according to Hypothyroid uk they were low normal and not optimal, my GP wrote to the endocrinologist who didn't recommend treatment with thyroxine and checked my prolactin, IGF1 and early morning blood cortisol ( for accuracy it should be 24 hr saliva, which they don't do on the NHS!) I was surprised he didn't want to test for antibodies, so I asked to see him, I've waited 5 months for this appointment, I just need to know from him that my adrenals and thyroid are working optimally and not struggling which I think they may well be and if they're playing a part in my condition. I just hope that when I see him I'm able to articulate in a way that he understands me and won't dismiss me as 'a bit crazy' or 'reading too much'....believe me I'd much rather spend my time losing myself in a good book than researching my illness πŸ€“πŸ˜•. I feel like I'm putting a case together for court without a defence lawyer! When I asked the rheumatologist what he thought he just said 'I can't comment but it's not your thyroid' I didn't find that comment helpful!

    My spinal X-rays show traction Spurs but I've not had the result for my hips yet, years ago they showed early sclerosis and my back and hips have been extremely painful lately not helped by having to stop anti inflammatories due to palpitations and high blood pressure and decline in kidney function. Without them I'm my whole body hurts deep into my bones and the flu feeling along with the spaced out unbalanced feeling is not nice at all. I'm extremely sensitive to drugs and if it says on the packet ' may make you drowsy' it usually knocks me for six making it very difficult foR pain control, I also have other things like wheat intolerance, IBS and interstitial cystitis, that all rear their ugly heads too😞

    Sorry this is a long one again but thanks for listening, it feels good to get it all out to someone that 'gets it' πŸ™‚

    Wishing you all the best too

    Diane x🌺

  • I forgot to say I'm 55 and post menopausal but still having nasty hot flushes for which I use bio identical progesterone cream and flaxseed oil capsules which seem to make them less aggressive. ☺️☺️X

  • My dear, you're a 🌟🌟🌟🌟🌟🌟: well done...so far you're doing much more than "so far so good"...you're actively involved in understanding your individual version of immune dysfunction while making sure that you're generally as well informed as poss....and you're getting great practice at presenting by explaining it all to us here: this will stand you in good stead at all your clinic appts, where you'll be better able to engage in the diagnosis & treatment + to actively collaborate with your consultants...making their job more efficient (fingers crossed they're capable of rising to the opportunity...if they prove to be Dud Drs, then all this prep you do will mean you're much more confident about arranging an alternative referral/second opinion)

    I feel as if I can at least just begin to understand what you're  up against...and I know there are lots of others here who can understand too

    Hoping to have more from you here on forum

    πŸ˜˜πŸ€πŸ’ƒ

  • Thank you Coco for your welcome here and your kind words, It really does help and it's so encouraging, as you know it's exhausting being ill let alone having to spend hours researching and making notes in order for the Drs to understand your plight, it makes it doubly exhausting! I seem to go through phases probably because I feel too ill to think about it and I just go with it and hope the next day will be better and then I feel as though I've had enough and find the strength from somewhere to put it all together, I'm on a mission to find out what's going on after all there's no way you can feel so poorly for so long for no reason. I know it's possible that I will never get my old life back but I just want to be able to function on a better level for myself and my family. When I have a better day it's not normal or great but I would say a little easier to get through and on those days I feel much more positive and hopeful and think to myself 'well if this is as good as it gets I'll take it' because it's slightly better than the endless dark days of pain and struggle...

    Anyway enough said..

    I'll keep you posted and thank you again.

    Take care🌺🌾🌸☺️

  • You're on the right road πŸ‘πŸ‘πŸ‘πŸ‘πŸ‘πŸ‘πŸ‘πŸ‘πŸ€πŸ€πŸ€πŸ€

  • Hi Diane wow your story seems so fimiliar to mine except i am unsure about the wheat intolerance.but what im really curious to know is the cystitis u are mentioning.could u plz explain what exactly that is.I am currently on eltroxin for my thyroid n finding this very difficult as ive gained way to much weight.The dr.said the eltroxin will make me loose the weight but still no weight loss.Also the medication is causing my face n neck to break out almost like cystic acne which im notok with at all.any advice or knowledge would be appriciated.thnks tammy

  • Hi Tammy, I'm so sorry you're having such a rough time too, these auto immune diseases are so unkind to us aren't they! Interstitial cystitis is basically inflammation of the bladder without actually having an infection, I've had it for many years now and dare I say it's been much quieter of late but I am often aware of my bladder I often have  discomfort that can flare up at any time especially if I'm very anxious or stressed about something and when it does I have to see the dr to get my urine tested and usually it comes back clear! Hard to believe when it's so friggin' painful, I took Detrusitol twice a day for 14 years (this calms the detrusor muscle) but I stopped it last year and now take it when I have a flare up, I do take a small dose of antibiotics ( nitrofurantoin) when it niggles just to keep my bladder clean to try and lower the risk of infection, I drink plenty of water too so when I wee I have a drink but I don't overload myself with water because I don't want my bladder constantly being told to empty, if I don't drink enough then my bladder really knows it and starts feeling 'aggravated', here's a link to the nhs about IC 

    nhs.uk/Conditions/interstit...

    Your story about Eltroxin sounds very familiar to me as I have a very good friend who is hypothyroid and is having a terrible time on it with so many awful symptoms, I haven't been diagnosed with thyroid problems but I did see the endocrinologist on Tuesday and I've had a whole batch of blood tests done to find out. My friend has felt worse since she was put on thyroxine than she did before and is putting on weight and however hard she tries she can't lose it and she is a very clean eater because she wants to be well and is finding it very depressing. She has done a lot of research, it seems that there are many people suffering while taking it   and probably need to be taking T3 with it, levothyroxine is a synthetic thyroxine which many people can't tolerate well. Before the 70's people were given Natural dessicated thyroid from pigs  that was tolerated extremely well and people felt much better, apparently it is available but only on private prescription, so I'm praying all my thyroid blood tests come back normal! The Thyroid UK website has lots of information, I printed a lot of there info off and highlighted areas and took it with me on Tuesday to ask the consultant questions, also if you're on Facebook there's the Hypothyroid UK support group that are very interactive and will support and advice you and you'll soon realise that you're not alone in your suffering. Have you talked to your GP about these side effects you're having? if not then maybe go back to speak to him/her and if you're still not happy then ask to see an endocrinologist, it took 5 months for my appointment and my friend is also waiting to see him because of the trouble she is having with thyroxine, 

    I hope this helps a little bit Tammy

    Best wishes

    Diane x

  • Hi Diane,

    It's not really possible for us to say whether you may be given a diagnosis of lupus or not based on your test results. A positive ANA test is a possible diagnostic criterion for lupus, but this would need to be combined with symptoms and possibly other clinical markers for a diagnosis. Unlike the dsDNA, it is also not exclusive to lupus. 

    If you would like more information about lupus and how it is diagnosed you can request or download one of our packs from our website at lupusuk.org.uk/request-info...

  • Hi Paul,

    Thank you so much for your reply to my post, I understand I need to be patient and wait for my follow up appointment to discuss it all with the consultant and thank you for the link too, I'm sure that will be useful to read so I've  just been on and requested it.

    Best wishes

    Diane

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