TheLupusSite.com banner

1 - 4 of 4 Posts

·
Registered
Joined
·
1 Posts
Discussion Starter #1
My Auntie had lupus but sadly passed away in her early 20's from it as 25 years ago they didn't seem to know much about it. Since then my other Aunt has been diagnosed along with 3 cousins and my sister. Does this increase my chances of having Lupus? When I read the list of symptoms I have had several of the things but these could also be put down to other things in life. I had an ANA test along with my sister and cousins 8 years ago and all our tests came back negative but now they have been diagnosed over the last few years with positive ANA tests. I went to my doctors but dont feel like I am been taken seriously. My doctor said that another ANA test could come back negative again so if I was that desperate to know he would send me for a genes tests to see if I carry it. Should I have a gene test?
 

·
Registered
Joined
·
7,800 Posts
Hello Kelly and welcome to the site :)

Although lupus is not strictly speaking hereditary, it does have a genetic element and family history should be taken seriously by your doc.

I don't know what "genetic" test the doc is talking about as I haven't heard of any genetic test that can tell us whether or not we would be likely to have lupus (outside of some new things coming up in research :scratch:). Certainly not one that would be done by your local GP!

If your last ANA test was eight years ago and you are suffering from symptoms that you know are not normal then it is high time you had another. Eight years is a VERY long time.

I would ask for a referral to a rheumatologist and if your GP is not willing to work with you on this then I would see if you can't change GP. Sometimes that is even possible within the same practice and can make a huge difference.

You can find a list of the classification criteria for lupus at this link. It might help you to see if your symptoms fit.

http://www.thelupussite.com/forum/showthread.php?t=33123

Lupus investigation (and diagnosis) requires a great deal of experience. Lupus and other auto-immune diseases are extremely complex and a GP would rarely have the necessary knowledge let alone know which blood tests to get done.

Hope that helps a bit,
Katharine
 

·
Pollianna
Joined
·
485 Posts
Hmmm, very odd statement from you doctor. I recently have given blood for genetic testing. I had to see a Proffessor of Genetic Dermatology and he had to fill in a special form for the blood to go to Aberdeen/Scotland where the genes labs are. Seems very odd if your GP can just order genetic tests off the cuff. :rolleyes:

I would insist on seeing a Rheumy, in fact that's exactly what I did after 10 or so yrs of chronic illness and being told there's nothing showing in the bloodwork even though I was deteriorating...... I got myself to the London Lupus Unit. My illness showed up, in black and white cause he knew what to look for

You don't mention your symptoms. are you feeling terribly unwell ATM?
 

·
Registered
Joined
·
14,661 Posts
Welcome to the forum Kelly

I am sorry about the family history of lupus which does make your having lupus or a similar sort of disease somewhat more likely. It is reckoned that there is a hereditary predisposition but the disease needs one or perhaps even several triggers to start it off.

My doctor said that another ANA test could come back negative again so if I was that desperate to know he would send me for a genes tests to see if I carry it. Should I have a gene test?
I advise you to get another doctor as this one doesn't have a clue about lupus. ANA can certainly become positive in time. It can come and go even when it was there at time of diagnosis or at any time in the past. Although is extremely common in lupus in fact there are many other diagnostic criteria.

There is no genetic testing diagnostic of lupus at the moment. There is a great deal of research going into the genetics of lupus in people with lupus and their close blood relatives. Last time I read up about it they had identified 36 gene markers ,as they are called. There are some types of what's called HLA that are particularly associated with sorts of lupus and other diseases but people who have these particular HLAs do not necessarily have that associated disease and not everybody with that disease has the type.

If there is serious doubt about a particular diagnosis, then genetic type testing might be done to provide an additional clue to help differentiate between diseases with very similar symptoms. Otherwise it is largely of academic interest. This sort of testing is very costly.

The family of people with lupus might have relevant antibodies such as ANA which might suggest a greater risk of developing the disease, but if there are no symptoms there is no disease.

Lupus diagnosis is made by carefully considering a person's entire health history, recent and current health problems, close blood relatives' health problems, by examining the patients for signs and by a wide variety of tests - blood urine and sometimes imaging. I suggest you look at the articles about symptoms, diagnosis and testing on the information section of this site which gives an easy to understand introduction to all aspects of lupus.

While your family history makes lupus a more obvious possibility, the symptoms can resemble those of many other diseases so if you are feeling unwell it is well worth deciding to get a thorough work up to find out if there is a cause.
Many diseases are easily treatable, and lupus can very often be stabilised and well controlled. The sooner it is effectively treated the better the outcome and of course quality of life. It is not a question of "being desperate "( what a patronising thing to say ) more of being as well as possible and not risking kicking oneself in years to come for not having persisted

Please let us know how you get on and don't hesitate to ask for further advice - there's a vast wealth of information and experience here.

Bye for now

Clare
 
1 - 4 of 4 Posts
Top