Need advice feedback something

[Sm86]

Hi, I am very new to this and I am hoping I could get some good feedback and good advice on what to do. I have been sick on and off since I was about 14 years old and when I say sick yes I mean like flu,colds,strep throat etc but when I get sick with any type of virus etc it really hits me hard and also when I say sick im some times admitted to the hospital and its the same ol same ol we just cant figure out whats wrong or whats causing you to be so sick etc I mean doctors literally looked so confused in 2016 I got real sick and was put in the hospital twice and yet again they had no clue what was going on I had to have a stent put in my kidney and fluid drained off the outside of my lung and im very prone to getting pneumonia i can look at someone who is sick and be sick the next day or later that night its crazy and things got worse with my health after having kids i use to have what people would say porcelain doll skin never had no acne nothing now my face is just horrible i do have signs and symptoms of lupus i was seeing the amazing doctor who looked me dead in my face and said if blood work wasnt required etc she would diagnose that i have lupus i took two ANA blood test both came back positive also took a test called fana i think and it came back off...what does this all mean what should i do why am i always sick etc should i seek more help or let it go????

[LupusKaren]

SM none of us here are medically trained to be able to definitively answer your questions, but what I can tell you is, the average length of time to obtain a definitive diagnosis of Lupus is 7 years, in my case it was 12 years.

The difficulty with Lupus is, it mimics other conditions, and it is common to have tests come back negative many times, and some specialists without a definitive positive will move you on.

The FANA (Fluorescent antinuclear antibody) looks for auto-antibodies.

The best advice I can give you, is ask to be referred to a Rheumatologist, one who perhaps has a special interest in Lupus or any other auto-immune condition. It is also prudent to mention that the specialist should take a look at the whole medical picture of you, and not just reply on positive test results, which can be unreliable, particularly if disease is not active.

Good luck.

[bteter in reply to LupusKaren]

Hi Karen... I'm so sorry you're having to go thru this. Your situation sounds very familiar. I have taken the ANA 3 times and every time it's negative. I was lucky enough to find a Rheumy that treats the symptoms, not the test scores. It too approximately a year for them finally put on paper that it is indeed Lupus even though I test negative. The treatments have made an immeasurable difference!

I'd try to find a new specialist. Good luck!! Just remember you're not alone, although it sure feels like it sometimes!

[Kevin53]

It’s not easy the important thing is to get treatment, the badge can come later! Sadly some of the medical folk need to take this on board as well! Best wishes Kevin

[Chanpreet_Walia LUPUS UK]

Hi Sm86,

Welcome to the LUPUS UK HealthUnlocked Community!

I am glad to hear that you have a supportive doctor who is trying their best to find the cause of your symptoms.

An ANA test gives an indication on whether a person may or may not have an autoimmune condition. It does not provide sufficient evidence to confirm a diagnosis of lupus. Has your doctor discussed further testing for lupus with you? Perhaps you can make an appointment with your doctor to discuss what the next steps for a diagnosis would be.

To find out how lupus is diagnosed, you can read our blog article on ‘getting a diagnosis of lupus’ here: lupusuk.org.uk/getting-diag...

To find out what symptoms are associated with lupus, you can download our free information pack here: lupusuk.org.uk/request-info... .

It is important to bear in mind that lupus presents differently in everybody therefore, it is unlikely for two people to share the exact same experience.

Please let us know how you get on, wishing you all the best.