Did you have difficulties in getting a diagnosis of lupus?

[lupus-support1]

What tests (if any) did you undergo to confirm lupus?

What specialist (if any) did you have to consult to confirm your diagnosis?

How long did diagnosis take?

What, if any, difficulties did you face when trying to get a diagnosis?

[Smileyface LUPUS SUPPORT]

I am one of the very lucky people who got a quick and easy diagnosis. I had been coping for 18 years with chronic exhaustion and rashes, I thought the exhaustion was just part of getting older and also I was looking after four young children. As a child I had always had rashes so I really didn't think much about them.

I had been going to the doctors for regular check ups for my asthma, when one day he said to me, you always have swollen hands when you come to see me, let me run some blood tests.

The results came back border line. He said he was sure something was happening but he couldn't refer me till there was a deffinate change in my bloods. He gave me some very sound advice and that was if I felt worse I was to come back and ask for rheumatoid blood tests.

He retired not long after that. Then two years later I felt really unwell and so I asked the new gp to run the tests she laughed and told me I was too young, but I insisted and eventually she agreed.This time the tests came back very positive and I had an appointment with a Rhuematologist a month later.

My Rheumy ran loads of blood tests for most organs in the body, I had positive ANA high titre, thyroid antibodies and a poor eGFR, very high Anti dsDNA Antibodies and very low Plasma C4. At this point I was treated for SLE.

[lupus-support1 Administrator in reply to Smileyface]

Welcome Smileyface!

I hope you find this site helpful.

Be well!

Ros

[Chrissy53]

Hi my bloods confirmed 98% Lupus. The specialist told me to wait till this summer when the sun comes back as it affects my skin with rashes. She also says it may not come back??? I have no medication at present. I have asthma, and as a child suffered with dry echma. So it is taking over a year to fully diagnose which makes me feel depressed, tired, listless. Not good for my overall quality of life. Any suggestions very helpfull.

[lupus-support1 Administrator in reply to Chrissy53]

Dear Chrissy,

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

My first question to you is this: are you seeing a lupus specialist? Not all rheumatologists are lupus specialists.

Second, are you referring to discoid lupus (ie lupus of the skin) or systemic lupus? I am not clear as to what the 98% confirmation of lupus based on blood tests actually means. There is no single test for lupus and a diagnosis is not merely based on blood tests but on clinical evaluation. The clinical evaluation is over a time period because SLE (systemic lupus erythematosus) can be difficult to diagnose.

If I have understood you correctly, you were told to return in the summer and when the sun leads to rashes or not?

I gather that your symptoms (skin rashes) started in June when you were on holiday in the sun. However, you are also saying that as a result, you are feeling depressed, tired and listless. These symptoms can be the result of active lupus and/or a natural response to your situation. You don't know what is wrong and you have not been given any treatment or treatment plan other than to return to the doctor when you have another rash.

May I suggest you register at the LuPUS Message Board (lupus-support.org/LuPUSMB where we can discuss this more fully in a more private setting? You will also be able to talk to other people and find out about lupus specialists near to where you live.

If you have any problems with the registration, please email me with your details: roz [at] [lupus-support] [dot] [org] [dot] [uk]

Be well!

Ros

[Hidden]

I was diagnosed by Rheumatologist 14 years ago with Fibro. No blood test take. Am nurse who is now unable to work. Had some abnormal labs from my internist when I had awakened with worse pain in my life. Joints swollen, could hardly walk. Ankles woke me with severe pain when moving during the night. Had ESR of 60 and cortisol level very high. Had to give me steroid injection and Medrol dose pack x 2. Then had appt with rheumatologist. My tests came back good. Except for tri phase bone scan. Showed high activity in wrists, hands, fingers. She said it was positive marker for Lupus and I had every symptom of Lupus. She said I have chronic pain syndrome, chronic fatigue syndrome, multiple connective tissue diseases, Raynauds, Sicca , multi site arthropathy. Started me on Plaquenil. To start prednisone after Endocrynologist visit. My internist wants me on permanent dissability. Currently on short term. I know I can't work and it is sad.,unable to tolerate any stress.,can't concentrate, forget things and am so slow at my work. Have had to take severe income cut. By 70.000 a year. Life is like being much older than I am. Just turned 54. Have 9 beautiful grandchildren and can only keep them about 2 hours at a time. Also have heart disease with a 40% blockage. Looking for lawyer to help me get the permanent dissability. Any ideas?

[lupus-support1 Administrator]

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

I hope you find yourself a good lawyer - I suspect you are in the US?

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.

Be well!

Ros