First post - waiting for some sort of diagnosis

Hi all, I've been following this community recently. I have been suffering worsening anaemia for the 1-2yrs. I have had various tests and scopes via gastro consultant but everything was negative so i was discharged.

I have now had to begin a series of iron transfusions as it was so low and tablets and liquids weren't making a difference. For the past 5 weeks I have been floored and been off work. Gp has been quite persistent and given me lots of blood tests. He thinks it could be lupus.

My last lot of bloods showed inflammation he said, but the Ana test was negative. He said he still suspects lupus and has referred to rheumatology.

I was at surgery again this morning having the tests repeated so I asked the nurse if she could give me the figures for the Ana but she said my records only show it as Neg, no numerical value at all.

I am living with severe fatigue which affects my day to day tasks, joint pain in hips, elbows and wrists, & a burning pain around my knees. I also have periods where other areas of skin on my legs feels burnt, but there's no rash. On holiday earlier this year I took what a pharmacist described as a sun allergy on my feet and up to my knees. This flared on my jaw and neck when I returned to the UK and the weather was nice. Last year when we were away I suffered a bad reaction to an insect bite, half of my face swelled up & again had to see pharmacist for allergy med. My skin in general feels painful when touched and I am covered in bruises. My mouth is dry and I struggle to eat dry foods like biscuits without coughing and spluttering. Even my eyeballs hurt !

I know many people with lupus have the malar rash so I hadn't considered lupus myself. I'm just so fed up feeling like this and want some sort of answer. I feel I'm rattling with pain killers and am fed up of being in bed so much, I feel useless.

Sorry for rant, but really just wanted to let off steam. I'm not convinced I have lupus but there must be something causing me to feel like this. I hope I don't have to wait too long to see rheumatologist & not sure what to expect.

Any advice welcome.

Sending gentle hugs :-)

2 Replies

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  • Hi Trigger2,

    Good luck with your rheumatology appointment. I hope that they are able to find the cause of your symptoms and treat it appropriately. Let us know how you get on.

    If you want more information about lupus and how it is diagnosed, we have a free pack which you can request or download from our website at lupusuk.org.uk/request-info...

  • Thanks Paul. I've had a look at information on the website. I understand that some people can have a diagnosis of connective tissue disorder without the Ana , I think it is. I was surprised this morning how little information was on my records, many things I've seen have people quoting their results. Strange how doctors work differently. Hopefully I will get answers from rheumatology.

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