Results 1 to 2 of 2

Thread: Hello, new, undiagnosed and scared, and becoming increasingly convinced this is lupus

  1. #1
    Join Date
    Aug 2013
    Thanked 0 Times in 0 Posts

    Default Hello, new, undiagnosed and scared, and becoming increasingly convinced this is lupus

    Hi everyone, my name is Tink and I'm in my mid twenties.

    I guess I've been reading about lupus because I have so much going on and no unifying diagnosis (but lots of evidence of things being wrong) and I suppose my biggest question to all you who have so much experience of lupus is does this story sound familiar?

    I've had heart problems since childhood, recurrent SVTs that are resistant to ablation so I take beta blockers and flecainide for that and cope well with it. I also have some mild-moderate tricuspid regurg (leaky valve) with associated murmur.

    When I was 20 I started having trouble with my right eye; in darkness I'd lose sight in it. I was looked at by an ophthalmologist who diagnosed an Adie's pupil. Reassured this was benign and there was no treatment for it; it rarely if ever bothers me.

    A few years ago I was diagnosed with crohns disease after getting recurrent chronic diarrhoea with blood and mucus and the most severe abdominal pain imaginable. The diagnosis was made after scans because they couldn't complete a colonoscopy. I've been on azathioprine (immunosuppressant) since and mesalazine and this has largely settled aside from occasional brief flares.

    A year ago I started with horrific abdo pain again, it took me to the ED where I produced a urine sample of almost pure blood. Since then I have had intermittent episodes of horrendous loin-groin pain and weeing blood. I also wee blood in between these episodes with no pain on occasion. They looked at my bladder with a camera and found nothing. The biopsied my kidneys and found global glomerularsclerosis, tubular fibrosis and hypermesangial something. Immunology was negative (although my consltant feels this may be because I'm very very immunosuppressed). They diagnosed either a glomerulonephritis of unknown cause, an Iga nephropathy that was masked with my meds, or loin pain haematuria syndrome. Despite treatment with ramipril, this still takes me to hospital every few months and my kidneys have started getting damaged by this. Despite this I don't have persistent protein in my urine, but during flares I get a lot and inbetween flares, like with the bleeding, I get some protein on dip stick.

    Bloods show positive ANA speckled pattern even on immunosuppressant meds, but DsDNA etc negative and C3,4 normal.

    I also (which until the kidneys started getting sick I attributed to arthritis with crohns and haven't mentioned it explicitely to my drs) get joint pain, its actually getting increasingly severe but still not excrutiating or incapacitating by any stretch. My hips are the worst, some days, such as yesterday, these can be so painful and stiff from waking up that I cant walk fast. My knees are also dodgy as are my ankles. My upper limbs aren't too bad but I get neck and lumbar pain too. This doesn't require medication and in comparison to my other issues its not been too significant as I haven't really talked to my doctors about it. I do find sitting for long periods (anything longer than 5 mins) very uncomfortable though and find it more comfortable to cross my legs on the chair.

    My skin is quite bizarre. I most definitely have never had the butterfly rash, but I have had a rash I was told by a doctor looked like psoriasis down my arms and legs but was on the wrong surfaces, it was on the inside of my arms and legs whereas apparently psoriasis is on the outside usually. It wasn't particularly itchy either. I was referred to a dermatologist, but prior to the appointment I had steroids for my crohns and it disappeared so I didn't go. I've definitely had photosensitive rashes before. The first was years ago actually on holiday in florida, it was purple blotches on my arms that looked like bruises. The second time was last summer down the arm that had been directly in the sun, it was lumpy and red but not itchy. It looked almost like a heat rash, but it lasted 2 weeks and also bizarrely the scars that I have on my hand on arm from having cannulas (between the 3 big problems Ive had a lot of hospital admissions and cannulas) became really swollen, normally these scars are just little white blemishes, but they became big red lumps with this rash. I also very frequently get little tiny, tender, lumps all over my fingers and palms. These occasionally itch but are mainly tender. They look like the pics of dihydrotic eczema Ive seen online. In honesty Ive never bothered my doctor with these either (crikey if I saw my doctor with every little thing I got as well as the big ones, I might as well just buy a bed in the surgery!!). At a recent apt with my kidney doctor it was noticed I have something called a levido rash down my legs, feet, arms and hands, this is like a purple mottling. I've had this for years and its there most of the time, I didn't know it was abnormal and so never mentioned it.

    Over the past 7 months I've lost a third of my body weight; over 3 stone and most of that in the first 4 months. This is just from feeling sickly and a total loss of appetite. I'm anaemic (Hb 9.6) and the docs aren't sure if this is because of my immunosuppressant meds, because of bleeding from kidneys (and possibly bowel), because I'm folate deficient (due to crohns) or because of some other reason (?new) or maybe a mix of everything. I'm really tired too.

    I still work fulltime and will continue to do so until I keel over (love my job) but it is getting harder to keep going.

    I'm just wondering if there is anyone else with a similar story??? Feeling scared and lost and confused.....

  2. #2
    Join Date
    Mar 2011
    pinjarra, western australia
    Blog Entries
    Thanked 1,844 Times in 1,279 Posts


    hi tink, there is a couple of threads that may be of interest to you.

    i have mentioned these to help your understanding on what lupus is, and so you can see many of the other auto immune disorders.
    lupus can attack different people in different ways, so even though we have similar issues, often our problems appear very differently.

    your doctors have already proven that your auto immune system is in overdrive ..... azathioprine and mesalazine both help your condition.
    so it is possible that you may have other auto immune problems also. many of us have more than 1 problem, and often develop more problems as our disorders progress.

    luckly many of the disorders use the same types of medications .... so even though the doctors do not yet know exactly what is wrong .... they can treat your symptoms.
    i wish you success in a diagnosis, but please do not think you need a diagnosis to obtain treatment. it helps, but is not always essential.

    please keep us informed as your journey continues.
    When you're stressed, You eat Ice cream, Cake, Chocolate & Sweets. Why? Because stressed spelled backwards is DESSERTS.

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts