Constantly getting infections - didn't realise it could be something more!

Posted , 4 users are following.

Hi I'm a 27 year old female working in childcare, I catch a lot of bugs so this is one of many occasions I've had weeks off work...

This time I've been unwell with diarrhoea, nausea, headaches/migraines, random fevers, swollen throat glands, light sensitivity and dizziness, extreme fatigue, a really sore stiff neck and sore throat. The doctor put me on antibiotics and said its a throat and UR infection. He also tested my blood and it came back with a high titre of 1280, but all follow up tests for autoimmune diseases were negative including negative rheumatoid factor. There was a slightly low white blood count, low vitamin D level and Epstein Barr in there from a while ago but no one is sure when I had it exactly (this isn't the first time I've been like this!)

As well as all these symptoms yesterday my whole left leg was numb, like a dead weight feeling. At about 9pm out of nowhere I had severe cramping from my left hip down to my shin. Went straight to the medical centre just to be safe and they said its nothing to worry about.

In my family there is rheumatoid arthritis, 2 people diagnosed with crohns and vasculitis among other things.

As you can tell I am getting frustrated because I've now been sick for 11 days and the Panadol and antibiotics don't seem to be helping! My neck is so sore!!

Do any of you have any ideas or suggestions? The dr suggested lupus but the dsDNA was negative...

Anyone in a similar situation?

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5 Replies

  • Posted

    Yes I have vasculitis and fairly sure you have too. Your story is very familiar.

    All of my blood tests were likewise negative. I only have raised inflammatory markers and sometimes not even that. There is no absolure test for lupus or Sjogten's or Behcet's (which is what I have) or as far as I am aware any auto immune disorder.

    You need to be referred to the right kind of specialist to be diagnosed. It can be a challenging process. Took me over a year of seeing someone to be diagnosed but at least in that time I was being treated.

    Where are you in the country Lauren? I am assuming for some rrason you are uk based but don't obviously know.

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    • Posted

      Thanks Margaret,

      That's very interesting that your inflammatory markers didn't show up, my level was like 2 when it could be up to 30! I'm in Australia by the way. Also my grandpa has a pretty bad case of vasculitis too. Sorry to hear it took so long for you to be diagnosed, it is very frustrating isn't it!

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    • Posted

      Hi Lauren yes it is very frustrating. And sorry in a way to hear you are in Australia because I think this disorder is particularly badly understood and treated there for some reason. I do believe you have a vasculitis association there who might be worth chatting to.

      That loss of feeling neck pain etc is all so familiar. My head and neck pain was finally attributed to meningoencephalitis. Pain is awful.

      If you keep struggling with diagnosis I can ask people in my help group who are based in Australia to suggest good doctors to see. X

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  • Posted

    Hi Lauren please have your doctors rule out meningitis. Whenever I hear flu symptoms and stiff neck I think meningitis. Take care and good luck. Please fight for your health. You have to be your own advocate. Might wanna rule out multiple sclerosis as well leg sounds neurological but could be from meningitis.
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    • Posted

      Thanks Sheila, yes on Friday night the doc did mention viral meningitis but he also said that I would have been screaming when he moved my neck and leg! I'd have to be much worse to have meningitis, like emergency room time! Also the only test is apparantly a spinal tap - not keen on having that done!

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