How do I get a diagnoses ?

I have changed to a new hospital last summer as I was getting no where with my local hospital, plus they kept cancelling appointments as they had no staff.

Happy with care I have got at new hospital and they have run several blood tests, I've had a chest X-ray and they have changed my meds. But they seem reluctant to give me a diagnosis or even confirm the one of connective tissue disease and Raynaurds I had, I also have lung damage-never smoked, I think I'm getting worse.

Been ill for 4 years now and it's getting me down.

I am on Hydroy which I know is the treatment for Lupus, but as most of the time I look well, I feel a fraud, people ask me they if have found out what's wrong with me yet and all I can say is something autoimmune :( they look at me like I making it up.

I was told possible MS at first, my sister has it, then as no brain lesions sent to Rheumatologist, my GP thought it was early stage MS, but she has left now, and new GP just talks of things as 'my condition'!!

I do not have a butterfly rash but get a chest rash and this is worse after being in the sun. I have a positive P-anca, and seem to tick very box for Lupus.

Last time I was at the hospital, the Registar asked me what my old hospital Dx me with, I asked her what she thought it was? She just smiled.

Do I have to be more forceful? I find it hard as I can not, well most of the time think straight. I also have crippling fatigue.

Sorry to rant on but it's getting me down.

4 Replies

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  • ask for a DNA blood test to give u a lupus result

  • Is that what I ask for? Or is it a Lupus DNA test, I have had several lupus blood tests but they didn't say anything about the results at my last appointment, only that my Vit D was less than 10, on mega dose supplements now

  • Hi Gymbabe,

    We've got a booklet called 'The Diagnosis of Lupus' that you might want to take a look at. You can find it here: lupusuk.org.uk/publications. This will be able to provide you with some information on the kinds of tests that can be used to diagnose lupus.

    Additionally you could request a free information pack from lupusuk.org.uk/contact-us. The booklet is included in that pack.

    George

  • Ask your GP receptionist for copies of your hospital letters, failing that, then see your GP and ask what they are testing for.

    It could be that you have a connective tissue disease that they are reluctant to name until all the tests have been done.

    Good luck.!

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