Today at 12:15 AM Hi my daughter who is 18 yrs old has had all the symptoms and medication that is prescribed for lupus, but no diagnosis??

[Lisarok76]

Not one of the many docs she's seen has even mentioned lupus in there attempts to make her well again. I have Raynaud's phenomena and my other daughter has this too. How should I go about getting her diagnosed properly? She's always in pain and really fed up with not knowing what's wrong with herself! As a mum I hate seeing her in hospital in soo much pain, I'd give my life to take her pain away. Where do I start?

[LupusAdmin3 LUPUS UK]

Hi Lisarok76,

Has your daughter been tested for lupus? The GP will usually refer the patient to have a ANA blood test (Anti-Nuclear Antibody). When found in the blood in most cases it is known to cause a positive test for lupus but isn't necessarily conclusive.

If you think it will help, i have an information pack available which explains about the condition, the symptoms and what the process is leading up to diagnosis which i can happily send to you. Just send me a quick email or private message with your name and address and i will pop one in the post. [e-mail]

If there is anything else i can do for you or your daughter please do let me know.

Best wishes,

Hayley

LUPUS UK

[Whathappned]

Hi

Unfortunately getting a diagnosis takes time. I found that although my diagnosis is still a list of symptoms rather than a disease they have started treatment. I was eventually told by the nurse specialist that there is an autoimmune connective tissue disease and what it looked like it was evolving in to but it is still not on my notes. The problem is its a label that effects your life and its hard to get it removed once its been given. I tried to get life insurance renewed and found I got turned down.

As I say I don't have a diagnosis but I do get bloods taken and these are elevated and that's what they are trying to sort out with the methotrexate. I initially got hydroxy because of the fatigue and general aches. In the end I asked what it was rthey where thinking I had.

Good luck