[Katharine]

Hello and welcome

I'm sorry to hear what brings you here but want to reassure you, it will get better!!

From the sound of your sypmtoms it certainly sounds like you need a referral to a rheumatologist. I presume the unhelpful doctor is not one?
On the whole most docs know little or nothing about auto-immune diseases which are extremely complex.

I know that it is not necessarily easy to find a rheumatologist specialised in auto-immune diseases but there is a section on this board where you can post to "find a lupus doctor". it would be a very good idea to post there (even if you are already seeing a rheumy - as a second opinion seems necessary).

If I understand correctly someone suspects an auto-immune disease but you haven't been started on any treatment?

Feel free to ask plenty of questions, we're here to help as much as we can.
In the meantime, I'll send lots of hugs and virtual Belgian chocolates as it sounds like you are in great need!! :hug:

Katharine

 

[Katharine]

Hi there,

I am presuming that when you say that you tested positive for an auto-immune disease that you tested positive on the ANA test?

The ANA test is a basic "screening" test which can indicate an auto-immune disease. It is not specific to any particular auto-immune disease though if you have a very high titre is is a strong indication of lupus.

Many people will test positive on a lower titre for many reasons. Among them things like infections, genetics etc. A low titre would most likely be ignored by many doctors even if "officially" it is positive.

If you have a high titre ANA positive test, the doc will then order more specific antibody tests which can help distinguish which disease it is.

Auto-immune diseases are highly complex and blood tests are only one part of the diagnostic process. You also need other symptoms and criteria to obtain a diagnosis.

If you take a look at the diagnostic criteria at the top of the "not diagnosed yet" section this should give you better idea.

This link also explains the basic bloodtests a little
http://www.lupus.org.uk/article.php?i=39

hope that helps,
Katharine

 

[Katharine]

Yep, those symptoms certainly merit further investigation.

I would do as greenhaggis says and maybe see another GP and ask for a referral to a rheumatologist (one who specialises in auto-immune diseases).

good luck and keep us posted,
Katharine