trying to get a diagnoses

[Rubydax]

Hello,

I was wondering if anyone can offer any advice or support.

For years now Iv been having body pains being exhausted to the point I would fall asleep sat up. Not being able to do normal day to day things some days. .

I got diagnosed with vit d deficiency I’m on tablets everyday for this for the pain a being exhausted it helped the being exhausted a falling asleep all the time but the pain never stopped.

Earlier this year in April I thought I was just having one of them my moments when I feel super unwell for no reason Iv had it for years so just got on with it as I do.

but I ended up in hospital for 5 days with rasied inflammatory markers, high temperature an hofffic kidney pain.

they treated me for a kidney infection

But I didn’t have a kidney infection the drs openly told me this they had no clue what was wrong with me.

Since then I have been getting the buttery rash, swollen arms feet. The worst headaches and neck pain. Wrist an hand pain. Some days hands feel they don’t work correctly.

My drs think it’s lupus I have so many of the symptoms but my ana test was negative. My kidney function test was satisfactory. . so the rheumatologist wanted me to have x rays for my wrist pain. Awaity results.

This week Iv started to feel very unwell again kidney pain! , straight to drs blood an Lucolights in urine. Short strong course of antibiotics. If no better in a week to go back,

I’m so scared to end up back in hospital that unwell again.

Just wondering if anyone else has had a negative result but all the symptoms ?

Thank you for reading 🥰

[StriatedCaracara]

My pattern of symptoms was similar.I was getting blood and leukocytes in my urine,, no infection, really bad loin pain. Renal ultra sound and CT normal.

I asked for ANA, it was positive though, but all other results only negative or borderline.

Joint pain, malar rashes, dry eyes and mouth dry gut, chest pain, difficulty urinating, pebble poo, headaches, one sided migraines, numbness in feet, postural othostatic tachycardia..fatigue...list goes on, and all very sudden.

Much of this for me happened after early covid infection pre lockdown and then got first rashes after first AZ vaccination after this.

No answers, GP concerned, local NHS rheumy after two visits said symptoms were all in my head and advised to go back to urology.

Went private for diagnosis, although no insurance. Diagnosed with Undifferentiated / Undefined Connective Tissue Disorder (UCTD). Realised after this I don't met 2019 SLE criteria intended for research but NHS departments may be using this to diagnosis too, and, I believe, to control caseload.

Following diagnosis of UCTD, my symptoms went on hydroxychloroquine. In the past people could be diagnosed with sero- negative lupus. Have not heard of such diagnoses recently.

Covid seemed be the start of kidney issues. It is strange it is so hard to get any NHS help, beyond typical long covid pathway. I resorted to searching online and found research being done at the University of Texas in Austin. Preexisting autoimmumity I believe can be worsened by covid, but here in the UK I found there was not much info online about this at the time I looked..

[Haylz2109]

Hi Ruby, Oh my gosh I could of written this post myself very very similar situation, mine started 4 years ago after I had my second child. Started off with tremors, fatigue etc fast forward numerous investigations and biopsies they found I had a vitamin D deficiency which I've been put on medication for life. Forward to today I have so many of lupus symptoms however my Ana and other markers are always normal aside from my liver enzymes. They tried different medications for me and noticed I respond to steroids which means there is definitely an autoimmune condition there so currently diagnosed with unconfirmed connective tissue disease (UCTD). I've been in and out of a and e 3 times so far in the last 2 months now I'm currently waiting on a hospital appointment in Birmingham (3 hours away from where I live) and a colonoscopy to hopefully finally rule out everything or possibly provide a diagnosis. Right now they believe it's either lupus, bechets or chrons however they're confused as to why I have all these extra symptoms that don't relate to chrons.

Sorry for the long post I just wanted to let you know I can fully relate to what you're currently dealing with and have had the same negative results but all the symptoms.

All I will say is keep pushing with all you've got as you know your body better than anyone, sending you hugs 💕 xx

[KayHimm]

Oh, Rubydax, you are really suffering. These illnesses are hard to diagnose but your doctors are clearly focusing on this. The fact that they even mention the word lupus to you means they are highly suspicious.

We couldn’t possibly diagnose your illness but can help you understand what may be happening. Did the doctors confirm the butterfly rash? Have they talked about doing any further tests on kidneys? It sounds like so far your urinalysis has not showed concerning signs. Is it your wrists and ankles that are swollen and painful?

Kay