Hello Everyone! I have a question....

[ashleybriones]

My ANA TITER is 1:160, Pattern is SPECKLED, ANA TITER 2 is 1:160, and Pattern 2 is HOMOGENO. I have horrible headaches and my body just hurts and I am ALWAYS so sleepy. I could just close my eyes and fall asleep. I feel really weak too. Do you think I should be worried about anything? I went to my family dr because I had a rash on my face. He told me it was Malar. So he sent me to see a rheumatologist. I had more blood work done and my ana stayed the same. I don’t have a follow up until January 15th. I don’t feel good, I feel like I always have flu like symptoms. Do you think I have anything to worry about? I just want answers and I feel like this dr just doesn’t care. I’ve called the office a million times to see if she could let me know what my results mean but it’s impossible for the nurse to talk to me about them. I feel so lost! Sorry if I sound like a cry baby... I just want some answers.

[Paul_Howard Partner LUPUS UK]

Hi ashleybriones,

We aren't able to say whether you might have lupus or not as nobody here is medically trained - only a medical professional doing a full investigation will be able to give you a diagnosis.

I'm sorry that you feel that your doctor doesn't care. It is likely that they want to see you again in January to repeat the blood tests you've had done - this is normally required when diagnosing any autoimmune conditions to check that if any irregularities and auto-antibodies are persistent.

Are you on any form of treatment at the moment?

If you think it would be helpful I could send you one of our free information packs? Just send me a private message or email [e-mail] with your name and address and I'll pop one in the post for you.

[ashleybriones in reply to Paul_Howard]

Well I just feel like they don’t care because they never called me with my results when they said they were. I had to call them which is no biggie. But the girl that gave me my results said that everything came back fine including my ANA. So I was a little puzzled. Then I wasn’t feeling good and decided to call them again just to recheck my results. Then the nurse told me that my ana was positive and she didn’t know why the other girl told me it wasn’t. I feel like I am getting the runaround! I’m not on anything right now. Just some Propranolol for my headaches.

[Paul_Howard Partner LUPUS UK in reply to ashleybriones]

That does sound like a very poor service. Was this from your GP Practice? If it was, you might want to look into placing a complaint as it could prevent this from happening again and help lead to better care for yourself. Details of how to complain are here - nhs.uk/choiceintheNHS/Yourc...

Have you had an appointment with your GP to discuss the results and the fact that you are struggling with the symptoms? They may be able to help get your rheumatology appointment moved forwards or give some extra support until that appointment.

[misty14]

Hi Ashley

The suggestions Paul has given you about your Jan Rheumy Appt are great. I could just add that you could phone the clinic or secretary to see if you could be considered for a cancellation. It's worked for me!. You've got a smart GP recognising your rash, a lot wouldn't realise!. X

[Hidden]

Hi... I dont know about your symptoms and am not taking that into consideration, only your doc can diagnose you but I can only tell you this...

Different labs have different normal positive levels depending on the sensitivity of their testing and over the last few years they say it can be normal at 1:160. Researchers are learning more and more about ANA's and they know higher titres of 'HOMOGENOUS' pattern (1:320 up) is pretty specific for SLE (Lupus) and drug induced Lupus. High titre of 'SPECKLED' pattern is much more common and can be seen in RA, SLE, Sjogrens, Mixed Connective Tissue, Scleroderma Polymyositis etc and 'NUCLEOLAR' can be scleroderma, CREST syndrome etc. 'MIXED' is not significant.

Usually they write the result as "ANA titre 1:160 speckled pattern" on one line but below it would probably be a line saying "A result of 1:320 is considered positive" or "A result of 1:160 or less is considered normal" ... so when the nurse said it was 'positive' she was probably right, but she may not have seen the info below it. Its always best to talk to the doc tho in order to clear it up.

In my own case, about 6 yrs ago I did have loads of tendinitis and joint pain but I had a negative ANA. 3yrs ago I had an ANA of 1:160 Speckled pattern and the testing lab said it was normal however soon after I was diagnosed with Sjorgren's, RA and Hashimoto's. I also have chronic Uveitis, HS and allergic asthma, all classed as AI diseases. I havent had another one done but both my children were and still are mostly in the higher positives (one is homogenous, one speckled and both go up and down between 1:80 to 1:2640 - probably an average of 1:1320). On a titre of 1:640 plus symptoms at age 8 my daughter was diagnosed with lupus.

Every case is individual and you may or may not be diagnosed with something down the track. Good luck.

PS I should add that we were diagnosed on other antibodies coming up as well, you could ask if any more specific antibody tests were done.

[ashleybriones]

Thank you everyone... I will just wait and keep calling them and see if I can get in sooner. I just want to feel better... I so over feeling like I've been ran over by a bus!

Thank you