iheartcats Posted March 29, 2008 Report Share Posted March 29, 2008 Has anyone had an ANA test done for POTS to see if it is a secondary condition caused by a primary condition?I looked up that an abnormal ANA could be: Lupus, Sjogren's Syndrome, Rheumatoid Arthritis, Fibro...have you of you experience POTS from one of these (or other) primary conditions? Have any of you had an abnormal (high) ANA test?And is Shy-Drager a true concern for people with POTS? I've seen this referenced here and there...I'm still going through diagnostic testing all this is so daunting! Quote Link to comment Share on other sites More sharing options...
pat57 Posted March 29, 2008 Report Share Posted March 29, 2008 My ANA, Sedate and Rheumatoid factor are all abnormal. Those are the 3 used to confirm RA, and the RA Drs say I don't have it- no water on the joints. I did have a bout of RA. At that time my RA factor was 3 times normal. Its about 2 times normal now, and I have no symptoms- thank God. This was brought on by Chemo drugs so I consider the RA as in remission. Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted March 30, 2008 Report Share Posted March 30, 2008 My ANA frequently comes back as abnormally high and stains speckled/pink, but it's not the cause of my POTS or NMH/NCS.Nina Quote Link to comment Share on other sites More sharing options...
dsdmom Posted March 30, 2008 Report Share Posted March 30, 2008 My ANA has been tested several times and has always been normal. Quote Link to comment Share on other sites More sharing options...
832 Posted March 30, 2008 Report Share Posted March 30, 2008 My ANA is normal. Quote Link to comment Share on other sites More sharing options...
iheartcats Posted March 30, 2008 Author Report Share Posted March 30, 2008 Thanks for all your replies! Quote Link to comment Share on other sites More sharing options...
bgsu4 Posted March 30, 2008 Report Share Posted March 30, 2008 Mine have always come back abnormal from 1/160 to 1/640 at various times since the dysautonomia/pots. I have also had an active EBV panel during all this and I think they are somehow related. Since my tilts have stayed the same over 2.5 years they feel this is why I have the dys/pots, they feel post-viral and not a progressive disorder. Quote Link to comment Share on other sites More sharing options...
roxie Posted March 30, 2008 Report Share Posted March 30, 2008 My ana is high, my dr always puts it, "YOu have a high lupus indicator" but nothing else tests positive for lupus. He says he doesn't know how it plays into everything, but I had it done when I first got sick 10 years ago and then I had one last year and each time they were high. sorry i can't give more adviceMadeline Quote Link to comment Share on other sites More sharing options...
iheartcats Posted March 30, 2008 Author Report Share Posted March 30, 2008 Mine have always come back abnormal from 1/160 to 1/640 at various times since the dysautonomia/pots. I have also had an active EBV panel during all this and I think they are somehow related. Since my tilts have stayed the same over 2.5 years they feel this is why I have the dys/pots, they feel post-viral and not a progressive disorder.Well that is actually 'good to hear' - it looks like mine were 1/160...and now they want to do another ANA test and a few more other tests to rule out or diagnose conditions that cause the high ANA count.I'm trying to stay positive now - it's reassuring to know it could be post-viral (which CAN get better, I keep hearing) and that could be a possibility for the abnormal ANA. The doctor tried to reassure me not to worry at this point - there is no need until all tests are done and we know what we're dealing with. Still, the mind wanders! Quote Link to comment Share on other sites More sharing options...
JAQUIROUIN Posted March 30, 2008 Report Share Posted March 30, 2008 HiI have my ANA positive then the doctor made me a SS-A y SS-B for Sj?gren and it was positive I have POTS and for me its so tired because I have to live with both diseas. But I am studing all the treatments of tb oth diseas.Don?t worry. You need to have information and learn how to live with both.Have a nice day! Quote Link to comment Share on other sites More sharing options...
ajw4790 Posted March 31, 2008 Report Share Posted March 31, 2008 I have had a positive test as well. But I have also had many negative ones. Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted April 1, 2008 Report Share Posted April 1, 2008 Cat, elevated ANA doesn't always mean that you've got a major disorder going on; I have high ANA but never test positive for any of the specific antibodies that would indicate sjorgren's, lupus, etc. Also, some medications can cause you to have a higher than normal ANA test.Nina Quote Link to comment Share on other sites More sharing options...
morgan617 Posted April 2, 2008 Report Share Posted April 2, 2008 Ya, my ANA has never been normal. A rheumy once told me a lot of people walk around with a very low grade lupus that never gets worse and never gets better. That would be me......an only slightly off morgan Quote Link to comment Share on other sites More sharing options...
lotusflowersusan Posted April 8, 2008 Report Share Posted April 8, 2008 I am glad to see this topic. I am one of those who has had both positive and negative ANA results and docs have not yet been able to put it together. I know the ANA can indicate a number of different things, often indicating some sort of autoimmune issue. I do have Hashimoto's, and the docs sometimes suspect lupus, but remains a mystery. Quote Link to comment Share on other sites More sharing options...
Megan Posted April 8, 2008 Report Share Posted April 8, 2008 I don't remember if my ANA test came back normal or not, but I know that my sister's ANA was abnormal and she has Lupus. Is an abnormal ANA a hereditary thing?Meg Quote Link to comment Share on other sites More sharing options...
iheartcats Posted April 15, 2008 Author Report Share Posted April 15, 2008 I just had a second test and will have results during my follow-up in a couple of weeks. Lupus can have a genetic link, I've been told, and that's one thing that can 'bring about' an abnormal ANA.There are other things, too, and it seems some people have an abnormal one with no other symptoms usually associated with it (lupus, rheumatoid arthritis, other syndromes).You think it'd have to be related to something, though... Quote Link to comment Share on other sites More sharing options...
pamyla Posted April 16, 2008 Report Share Posted April 16, 2008 My ANA was previously slightly elevated. I got sent to a rheumatologist to evaluate for autoimmune, and they kept bringing up lupus. Exploring this is how I ended up with my lyme diagnosis. With treatment, my ANA seems to have returned to normal. Quote Link to comment Share on other sites More sharing options...
Megan Posted April 17, 2008 Report Share Posted April 17, 2008 My sister's ANA was due to Lupus. (not sure if this is relevant, kind of foggy right now!)Meg Quote Link to comment Share on other sites More sharing options...
iheartcats Posted April 20, 2008 Author Report Share Posted April 20, 2008 My ANA was previously slightly elevated. I got sent to a rheumatologist to evaluate for autoimmune, and they kept bringing up lupus. Exploring this is how I ended up with my lyme diagnosis. With treatment, my ANA seems to have returned to normal.Did Lyme disease cause your POTS, too? I have vaguely heard about that (but I don't remember ever being around ticks, etc. so they've not brought up Lyme with the abnormal ANA). Should this be something I should ask the doctor to check out to be safe? Quote Link to comment Share on other sites More sharing options...
pamyla Posted April 21, 2008 Report Share Posted April 21, 2008 Hi, Yes, I do believe either lyme or the other co-infections I have are the cause of pots for me. With treatment for babesia, one of the co-infections, I have been able to stand longer. I think it's always smart to at least rule lyme out. I never saw a tick on me, although I did like hiking and camping. I do want to mention that lyme testing is very unreliable, so a negative lyme test does not necessarily mean you don't have lyme. To truly rule it out you'd need to see a LLMD (lyme literate MD). Quote Link to comment Share on other sites More sharing options...
mcaimless Posted April 21, 2008 Report Share Posted April 21, 2008 From what I've read, the Ganglionic AChR antibody test is more specific for autoimmune dysautonomias. ANA is more sensitive for Lupus but not for other autoimmune diseases. Comparison of Cases Seropositive and Seronegative for Ganglionic Acetylcholine Receptor Antibody Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted April 21, 2008 Report Share Posted April 21, 2008 mcaimless, your link doesn't work properly.Nina Quote Link to comment Share on other sites More sharing options...
ajw4790 Posted April 22, 2008 Report Share Posted April 22, 2008 Hi!Thanks for that info! Out of curiosity where does one find an LLMD? Would that likely be a rheumy? Quote Link to comment Share on other sites More sharing options...
mcaimless Posted April 22, 2008 Report Share Posted April 22, 2008 Sorry about the link, I'm still trying to figure out the inserts in this forumComparison of Cases Seropositive and Seronegative for Ganglionic Acetylcholine Receptor Antibody Quote Link to comment Share on other sites More sharing options...
pamyla Posted April 23, 2008 Report Share Posted April 23, 2008 To find a LLMD you can check out http://www.lymenet.org/. Under 'flash discussion' there is a topic called 'seeking a doctor' where you can post your request. I think LLMDs can be in other specialties as well. It's similar to finding a POTS doctor unfortunately, there just don't seem to be enough of them Quote Link to comment Share on other sites More sharing options...
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