While my mood responded to antidepressants; the constant fatigue, fevers, chills, migraines and brain fog led him to think that there was more going on than a psychiatric issue.
He tested my ANA and found it positive 1:160
Referred to Rheumatologist. Disaster. She didn't want to test me further because I was a psychiatric referral. Depression causes fatigue, therefore I had a mental health issue and was waisting her time.
My new family doctor wondered about my ANA and re-tested it. It had increased to 1:320
Referred to an Internal Medicine Specialist. She ran a panel of autoimmune tests which came back negative. She diagnosed me with Fibromyalgia and told me my ANA wasn't meaningful.
Fast forward - one year later. I am feeling quite a bit better, but fatigue and headaches, brain fog still happen with alarming regularity. Often I'm fine on a brisk walk, can lift heavy objects without breaking a sweat...and then suddenly... I find myself short of breath doing the simplest of things. Anything physical or emotional stress comes at a cost. A busy day-trip to Detroit with my mother led to a three day sleep, with fever and aches.
But my mood is fine!
My psychiatrist is still not happy with my physical symptoms, and still doesn't believe that they are related to depression. He did another ANA last week which found a titre of 1:640 (Speckled).
He is puzzled by this, as a year ago, I tested negative for anti-thyroid antibodies, anti-phospholipid antibodies, anti-Sm, anti-Ro, anti-DNA....
Clearly, something is still wrong with me. Is a 1:640 titre important? I keep feeling like there is something else going on in my body, but running out of directions.
Holy cow! From what I've read, 1:640 is most definitely significant. But then, IANAD. Supposedly a very small number of people can be positive but not have an autoimmune disease. It's also possible to have a positive ANA before other symptoms make it clear what's going on.
ReplyDeleteAny chance you can self-pay and go somewhere else? There must be a rheumatologist somewhere in Detroit who would would be willing to talk to you, even if it means you'd have to pay out of your own pocket.
OR, since your psychiatrist is willing to look at the big picture, maybe he'd be willing to do a clinical trial of prednisone or plaquenil to see if that helps. Or help you find a different rheum who will actually listen to you. Good luck!
Hi WarmSocks,
ReplyDeleteThank you for your response - you make some great suggestions. I think my psychiatrist is the only doctor who has listened to me over the past few years.
Detroit is only a few hours away. I am going to start looking for a specialist with a good reputation. I would give anything to just sit and talk with a Rheumatologist who could answer my questions about antibodies.
Thanks for weighing in with your voice of experience.
My understanding is that about 5% of the population has an elevated ANA, but not all (less than half?) have an autoimmune disease. It seems worth looking into. The treatments for these types of illnesses are far from benign, however, which I'm sure you realize.
ReplyDeleteHi Penelope. Wow. What a story. I know zip about ANA, but I hope you can find some answers.
ReplyDeleteThe thing about a prednisone trial, I will warn you, is the prednisone can make you feel better just by itself, not because it's addressing an underlying issue. So there's that to consider too.
M
ANA in healthy subjects : There was no difference in ANA positivity among different age groups (Table I). Overall, ANA was positive in 13.8, 4.3, 2.1, 2.1 and 0 per cent of healthy controls at dilutions 1:40, 1:80, 1:160, 1:320 and 1:640 respectively.
ReplyDelete(Indian J Med Res. 2007 Jul;126(1):34-8.)
I'm having a similar problem. My family have an auto-immune disease (lil sis + mother: SLE, big sis : RA). So when i had lung problem last year, my doctor run an ANA test, the result is negative. She didn't tell me how high my ANA was. Last month, i'm having problem with my kidney. and once again my doctor asked me to run an ANA test. This time my ANA is positive 1:640. From what i read and what i know from my family, this is quite a problem and afterward some sets of test should be conduct. But he only told me to comeback in a year and half and do the test once more, to see if it increase, decrease or stable..i'm quite confused and unsatisfy..
ReplyDeleteI have Raynauds, fibromyalgia, telangiectasia, GERD, and a slew of other pains and problems. My ANA was 1:1280 (or so I know it was just over 1200). My rheumatologist and internest both suspected Limited Scleroderma but I moved away and lost them both as my Dr's and haven't been able to get medical help since...that was 8 years ago. Doctors since then have brushed it off and act as though I'm making it up. I don't ask for meds other than my BP medication so it's not like I'm trying to score something from the....How do you get doctors to take you seriously, especially if you no longer have insurance (they weren't helpful when I did have it either, other than those two initial doctors).
ReplyDeleteI have been having a high ANA titer speckled pattern since march 2010 that i know of.
ReplyDelete1:1280 had it rechecked the other day and it is 1:640 speckled.
Doctor is going to run all the other test now to see if anything comes back positive. However he told me back in March of 2010 that there are other things that can make it go up and once it does it could take up to 10 years to get back to normal. Such as something in the enviroment or a sickness you had. Then he also said something can be brewing and just has not shown its ugly face yet.
I have symptoms and have not been my same old self in almost 3 years.
Not that i want to have something but I would like to feel good.
Rheumatologist of course said Fibromialgia which i think that is just what they say when they have no clue what is going on. Enternal Meds doctor called it Polyarthralgia which when i look that up it is similar to Fibromialgia.
At one point this was causing me very much anxity. Prayer has helped me through that but ocationally I start to feel really bad again and just get agrivated because i just know something is not just right.
Good luck and please post updates and i will do the same. Maybe one day with each others help will will find out what is going on with our body.
Oh and they also try and say it could be because of menopause. I am 46.