SO CONFUSED AND FRUSTRATED. .

[whyme63]

I have had a lot of things going on with my body for a long time now..And I have been to several Doctors. I have had blood work done for several things..One is lupus..My ANA comes back positive. .And my speckled pattern has tripled..675..now..But I keep getting told I don't have lupus. My sister has lupus..And she tells me I have more symptoms than she does...And there is alot.:(( I was wondering if anyone has been through this before..And did it take a long time for you to be Diagnosed. .I am so sick..And I don't know what to do :((

[Cas70]

You poor thing - yes - so many of us have gone thru this - a lot of Drs just call it an auto immune problem - and appear dismissive - look on line for a Doctor or Rheumatologist who deals with Lupus. You will have to do this. There are so many immune problems it may not be Lupus - so be patient and as LUPUS UK for help they will advise you. St Thomas's in London, and Univ Hospital Brighton have clinics so don't despair - don't know where you are but the North seems to have more. Good luck and keep us posted. Ps Try Vit D and B12 daily - it was the first thing they put me on and it helps a lot.

[whyme63 in reply to Cas70]

Thanks. .For your advice and information. .

[lupus-support1 Administrator]

Welcome to LUpus Patients Understanding & Support (LUPUS) at HealthUnlocked.

Blood tests alone cannot diagnose lupus and are often difficult to interpret. There are some posts here about blood tests including ANA tests. There are healthy adults who have a positive ANA; and there are sero-negative patients who do have SLE.

The pattern of the ANA test can give information about the type of autoimmune disease present and the appropriate treatment program. A homogenous (diffuse) pattern appears as total nuclear fluorescence and is common in people with systemic lupus. A peripheral pattern indicates that fluorescence occurs at the edges of the nucleus in a shaggy appearance; this pattern is almost exclusive to systemic lupus. A speckled pattern is also found in lupus. Another pattern, known as a nucleolar pattern, is common in people with scleroderma.

It is important to realize that even though 98% of people with lupus will have a positive ANA, ANAs are also present in healthy individuals (5-10%) and people with other connective tissue diseases, such as scleroderma and rheumatoid arthritis. Moreover, about 20% of healthy women will have a weakly positive ANA, and the majority of these people will never develop any signs of lupus. One source cites that some ten million Americans have a positive ANA, but fewer than 1 million of them have lupus.

Therefore, a positive ANA test alone is never enough to diagnosis systemic lupus. Rather, a physician will order an ANA test if the patient first exhibits other signs of lupus. This is because by itself, the test has low diagnostic specificity for systemic lupus, but its value increases as a patient meets other clinical criteria. It is possible for people with lupus to have a negative ANA, but these instances are rare. In fact, only 2% of people with lupus will have a negative ANA. People with lupus who have a negative ANA test may have anti-Ro/SSA or antiphospholipid antibodies.

At the same time, if your sister has a diagnosis of lupus and I wonder whether there are any more family members who have autoimmune disorders, such as MS, rheumatoid arthritis, Type 1 Diabetes or autoimmune thyroid.

Have you seen your sister's rheumatologist/lupus specialist because that seems to me to be a sensible option.

If you are in London, then I would recommend Dr David D'Cruz, the Director of the Lupus Clinic at St Thomas' Hospital, London.

I can understand your frustration in wanting to know what is wrong. Lupus can take literally years to diagnose - even with a lupus specialist. What you do not want, is to be given the wrong diagnosis as this will cause loss of confidence in your doctor and give you a great deal of unnecessary anxiety and distress.

We also have another website called the LuPUS Message Board where you can also post questions and talk to other people. Registration is FREE and we offer free information and free online psychological support. We specialise in psychological support with our own counsellor/psychotherapist available.

By becoming a Member, you will have access to the private forums and because they are private, only Members have access and even bots and search engines are forbidden.

When you register, please use the following format for entering your date of birth: nn-nn-nnnn where n=number. Please use the "-" separator and not "/".

Finally, please go to: lupus-support.org/LuPUSMB and Sign Up.

I look forward to talking with you more!

Sometimes we need to talk to people who understand and who are not family or friends.

With good wishes!

Ros

Disclaimer: No attempt is made to diagnose or to make any medical judgement. You are advised to seek the advice from your own physician. LUpus Patients Understanding & Support (LUPUS) is not a substitute for your own doctor.

[Shaysuekirk]

It's a very common problem. I agree that Vit D and B12 were some of the first things for me. Then, thyroid meds, then FINALLY got to Lupus meds (plaquenil and gabapentin). I'm finally feeling pretty darned good (comparatively). But, it took me a year to get it all straightened out. Be persistent. It gets better.