danelle Posted July 19, 2005 Report Share Posted July 19, 2005 Hi all, been out of commission for a while. I just got word that my ANA was 1:1280. The other one I had done a few yrs back was NML. I am being sent to a rheumatologist. Does anyone know if this NORMALLY means Lupus, MS, scleroderma, cancer or what? I know no one can diagnose me until I see the Dr but was just wondering. My family Dr did tell me there is Noway that my fibromyalgia could cause it to be that high.Didn't knowif anone may have any ideas, not sure when my appt is yet the dr is calling the rheum to get me in sooner than her first availavle. Sorry for all tot he bad spelling hope you can read it. Don't anone worry, I won't take what you say literally (I mean this in a nice way) until i see the dr, so I won't be freakingout , it's ok for anything you have to tell me andit is all aprreciated. Very POTS today Danelle Quote Link to comment Share on other sites More sharing options...
nantynannie Posted July 19, 2005 Report Share Posted July 19, 2005 Hi Danelle,What are you other symptoms? From your post I am gathering that they are related to fibro. Did your doc tell you what pattern your ANA was? This info could help. ANA is associated with sooo many things, I would normally hesitate to answer, but I see that you are already aware of that so I am going to go out on a limb and say that with fibro symptoms and your ANA I would be leaning more toward lupus out of those you mentioned. I would certainly not be worried about cancer. See if you can find out what your ANA pattern was and then you can narrow it down more. Please don't assume anything till you see a good doc. Hope you get some answers soon...Ann Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted July 19, 2005 Report Share Posted July 19, 2005 I have that all the time--ANA elevation is not specific, which is why they're sending you to a rheumetologist. The rheum will then likely test you for the specific factors associated with different disorders. I'd consider waiting to hear what the rheumy has to say...Keep in mind, so meds, allergies or an infection can send your ANA high--it's just a general signal of an autoimmune reaction, not a sure sign of a disease or disorder. Personally, I've never tested positive for the specific antingens associated with: lupus, sjorgrens, raynauds, rheumtoid, scleroderma (my great aunt died from it), etc. When mine is high, it's also stains speckled and pink, which is a general indicator of some of the above mentioned disorders, but is not diagnostic without clear clinical symptoms and elevated specific factors.Nina Quote Link to comment Share on other sites More sharing options...
danelle Posted July 19, 2005 Author Report Share Posted July 19, 2005 MM,How high has yours gotten? Don't know the pattern yet, waiting for the Dr to call back.................................. Quote Link to comment Share on other sites More sharing options...
steph37822 Posted July 19, 2005 Report Share Posted July 19, 2005 oops Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted July 19, 2005 Report Share Posted July 19, 2005 the lowest mine has been is is like 1:160 ....it's been at the same level you have... I have lots of joint pains, lots of allergies, etc., so mine is likely due to the constant inflamtion. Mine was off the charts high when I had mono, and again when I had mono the 2nd time. It stayed in the 1:640 range for several years...I think my last one was 1:320. All my other rheumotologic markers are normal. I've never had the Mayo test for antiobodies that attack the ganglion (nerve cells)--you can read stuff on this via this search http://www.google.com/search?hl=en&q=verni...G=Google+Searchbasically I didn't push for the test because there's no treatment as far as I can tell---so from my perspective, what's the point? If they come up with a treatment, I'll ask for the test.If you'd like to read about ANA, here's a page that describes the titres and staining patterns. Did your results mention the pattern??? http://pathology.uth.tmc.edu/clinicalservi...nterps/ANA.htmltry not to freak out... deep breaths... Nina Quote Link to comment Share on other sites More sharing options...
danelle Posted July 19, 2005 Author Report Share Posted July 19, 2005 hi all, thanks bunches for your replies so far . i am sorry I don't feel like answering all the questions right now but I hopefully will feel up to it later this evening. i am sorry about that because youall have been SOOOO kind and show so much compassion. I am concerned but apparantley not as worried as the dr.(too tired to worry ) what will be will be. I am ok with it rigth now so whatever you all want to tell me is so much appreciated. I promise to answer all questions either this evening or in the afterneen tomorrow-I'm kinda trying to keep this from my family because they worry enough, they don't need any other things to worry about until i have a definate answer.LOTS OF LOVE TO ALL OF YOU,danelele Quote Link to comment Share on other sites More sharing options...
ariella Posted July 20, 2005 Report Share Posted July 20, 2005 hi Danelle,Want to second Nina's view on ANA. Although it can indicate some serious autoimmune diseases, it is not used as a definitive diagnostic test on its own. Some people who feel healthy have an elevated ANA from time to time. The Rheumy, if he is responsible, will send you for a slew of rheumy-antibody-blood tests. Unless those show something up, you may very well be told to go home and not be concerned. I've had a positive ANA with different patterns on and off for years. Interestingly, it has been negative the last 3 years, when I've been at my worst. I know, it doesn't make sense. If you are having severe migraines and a positive ANA, the neuro may be interested to know about it.Been there, wishing you some peace of mind,Ariella Quote Link to comment Share on other sites More sharing options...
Sunfish Posted July 20, 2005 Report Share Posted July 20, 2005 danelle-others have already hit the high points....most importantly that it can mean something significant but doesn't necessarily....i have had so many abnormal test results - ANA and others - over the years that certain docs have majorly flipped out about only for me to later me told by someone more in the know that things really aren't so bad. this isn't to say you shouldn't be following through with the rheum - you definitely should & it's great that you're going to be getting in sooner so that you can get some answers - but as hard as it is, try not to worry too much.hang in there,:-)melissa Quote Link to comment Share on other sites More sharing options...
danelle Posted July 20, 2005 Author Report Share Posted July 20, 2005 Sorry I couldn't get back to you all yesterday, I feel really bad about it. I will tryand answer your questions now.Ann, I am just having my regular severe POTS symptoms that aren't getting any better and lots of problems swallowing, losing weight, and the list goes on.......I spoke with the Dr this am just for a brief minute, she said she didn't do the pattern test that that is one of the tests that the rheumy will be running. She was able to get me in this Friday at 0800 (except for the time I don't do well at all int he am but I will make it there anyway). I am not worried about it at this point (whihc is really odd for me because I am so OCD but for some reason Im not)-doesn't do any good anyway Nina,Thanks for all the info, I'lm gonna check out the sites as soon as I am done posting I will let you all know something on Friday after my appt.Steph,Thanks for remembering Derrick . Thanks for all the info also. I don't think I have EDS, never been told I do but that is something I will bring up on Friday. Do you have any other suggestions on what to ask? I've never done this before so I am going in "blind"-boy I sure have lost my nursing skills..............BUT I will be sure that she is thorough. I guess I just need to do some research before I go in so that I know she is being thorough Ariella,BOy, this is really interesting. SOunds like lots of people with POTS have had elevated ANA's at some point due to something or another-kinda makes you wonder I know my Dr told me to expect a slew of blood work to be done-I hope the nurse is a good stick because I haev no veins to find-they love to hide Sunfish,Thank you for your reassurance. I hope to find out some answers soon. Can anyone tell me what to expect-other than bein g drained of all my blood and any pertinent questions to ask?Thanks again, you all keep me going,Danelle Quote Link to comment Share on other sites More sharing options...
ariella Posted July 20, 2005 Report Share Posted July 20, 2005 Danelle, You have me laughing about the veins. The insides of my elbows look like I've been injecting myself with something intravenously. They also have a hard time getting the vein, and always use a childrens size needle!Let us know how it goes. Quote Link to comment Share on other sites More sharing options...
morgan617 Posted July 20, 2005 Report Share Posted July 20, 2005 Dannelle, (speaking of spelling, watch out!) my ana is always high too, but they've never diagnosed me with anything specific. My rheumy told me many people have lupus and he thinks I do, but 95% of people with have it just enough to bother them, it never progresses any further than making you feel miserable. Like Nina said, there are specific patterns, ie. homogenous, speckled, mixed etc that they look at.As far as what to expect, you should get a very thorough exam and the doctor will be asking lots of questions, and yea you will get poked again. I got x rays too. There is a lot of very specific testing done in rheumatology, but labs don't always mean much. For instance, only about 40% of people test positive for the sjogrens antgens, so they typically go by symptoms instead. I expect you may end up a little frustrated before he's done, but hang in there.Good luck at your appt. morgan Quote Link to comment Share on other sites More sharing options...
steph37822 Posted July 20, 2005 Report Share Posted July 20, 2005 oops Quote Link to comment Share on other sites More sharing options...
nantynannie Posted July 21, 2005 Report Share Posted July 21, 2005 Hi Danelle,You got a lot of good info from our friends here. One thing that stands out is to write down all of your questions. Your doc should be able to tell you if your ANA is significant by running certain antibody tests. You will have to wait a bit for the tests to come back, but there is also a good chance that when he is done with your exam and history that he will have an idea as to what is going on. Please let us know how it goes. I hope your doc is a good one and I hope you have a good appointment with him. I am glad that you are not too nervous about this.Ann Quote Link to comment Share on other sites More sharing options...
leah1321 Posted July 21, 2005 Report Share Posted July 21, 2005 Hi I was actually just diagnosed with Lupus or Rheumatoid Arthritis, but most likely Lupus. my ANA is actually quite low. I do not have any high blood test results, but I have many of the symptoms, including the rash and some other positive tests plus deterioration of connective tissue. I mention this because the symptoms are the most important detail, not the blood tests. My doctor has followed me for years and just decided that he would treat me as if I had Lupus. It is true that only 5% of Lupus patients ever get a serious case. It is not generally life threatening and it has remission/relapse cycles so sometimes you feel good. In addition, autoimmune diseases have a lot of good treatments now because there has been a lot of research recently. I am taking an anti-malarial to try to put me into remission long term. It is helping but no remission as of yet. There are a large number of autoimmune diseases and the ANA could suggest one or it could suggest other forms of inflammation like infections and such. GI problems like celiac sprue and crohns could elevate ANA, so could some blood disorders. I say that not because I want you to worry but to try to eleviate worry- there are a million explanations and many are not so bad or are even completely benign and treatment options are good. See a rheumie and write down your symptoms. Also, relax and don't stress out about one blood test one time. Sometimes blood tests are just that- tests and they could mean nothing. Leah Quote Link to comment Share on other sites More sharing options...
janineerrn Posted July 22, 2005 Report Share Posted July 22, 2005 Hi Danell,ANA is anti nuclear antibodies, for some reason your body is producing antibodies that attack your own sells, like it would a bacterial infection. It explains a lot of your new changes. Its going to be another series of RULE OUTS because there are many reasons for this happening. I hope they find the reason quickly and can treat it.Mine have always been low.Call me if you need me.Janine Quote Link to comment Share on other sites More sharing options...
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