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Alopecia with positive ANA test -- update :((

Discussion in 'Women's Alopecia Areata' started by mandeloo, Apr 29, 2011.

  1. mandeloo

    mandeloo Guest

    I went to the doctor to see why I was losing my hair. They tested my hormones, thyroid and ANA. The ANA panel took a week longer to get back and it was positive.
    The only AI disorder/disease/whatever I could find that has a symptom of alopecia was lupus.
    The rheumatologist won't see me until the 19th and I'm scared to be honest.
    Anyone have this too? ThAnks
     
  2. as324.

    as324. Guest

    Re: Alopecia with positive ANA test -- do I have something awful

    Im sry. : ( if it is lupus it is completely manageable. but you need to try to see an integrative doctor if you can.
     
  3. Joann

    Joann Moderator

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    Re: Alopecia with positive ANA test -- do I have something awful

    Hi Mandeloo,

    I get positive results on the ANA test. In my case I have three autoimmune conditions, Alopecia Areata, hypothyroidism and Sjogren's syndrome.

    Try not to worry or think you have lupus until you're actually told that. I have even heard of having a false positive on an ANA test.

    There are many other autoimmune conditions and some people have alopecia as one of the symptoms of their autoimmune condition, others do not.

    The rheumatologist will look at any other symptoms you have and possibly do more bloodwork to give you better answers to what may be going on if anything.

    Keep us updated. Good Luck!!!

    Hugs,
    Joann
     
  4. Janie-Ann

    Janie-Ann Guest

    Re: Alopecia with positive ANA test -- do I have something awful

    Hang in there!
    A positive ANA by itself doesn't mean anything really. It could mean lupus or another autoimmune disease or arthritis... It's common in women over the age of 65, it's not unusual in people with NO disease at all. It's basically one piece of information, that has to be evaluated with more tests (oh fun) and correlated with other symptoms (hair loss is one).
    Good luck - keep us posted

    This is what the Lupus Foundation says... (there's more to read if you follow this link http://www.lupus.org/webmodules/webarti ... =76&page=1

    The Antinuclear Antibody Test: What It Means
    Diagnosing lupus is a complex process. It's not as simple as diagnosing a broken bone, strep throat, or pregnancy. In these conditions there are simple tests which, if positive, point to a single diagnosis. There is no single diagnostic test for lupus. There is a screening test called the ANA (anti-nuclear antibody) test which is often checked when a doctor suspects lupus.

    If the ANA test comes back negative it is considered a normal result, and it is very good evidence against lupus as an explanation for the symptoms. If the ANA test result comes back above the normal range the test is said to be positive. A positive ANA test by itself is not proof of lupus.

    Understanding the positive ANA test

    What does a positive ANA mean? Unlike a pregnancy test, which if positive generally means only one thing, a positive ANA can mean many things. There are many illnesses and conditions associated with a positive ANA, including rheumatoid arthritis, Sjogren's syndrome, scleroderma, and lupus, as well as infectious diseases such as mononucleosis, subacute bacterial endocarditis, and autoimmune thyroid and liver disease.

    Certain medications can cause a positive ANA, and many healthy people with no associated illness or condition have a positive ANA. In fact, about 5% of the general population will have a positive ANA. Thus, at least 95% of the people who have a positive ANA do not have lupus! A positive ANA test can sometimes run in families, even if family members have no evidence of lupus.

    The ANA is only a test and, like a high cholesterol value, a positive ANA doesn't necessarily equate having a disease. A positive ANA is only an indicator which points in several possible directions, and indicates that further investigation and analysis may be needed.
     
  5. littlenewo

    littlenewo Guest

    Re: Alopecia with positive ANA test -- do I have something awful

    Don't stress out :). Like Janie and Joann said it could mean you have something autoimmune and very simple :)

    Like Joann I have Alopecia Areata and other autoimmune stuff.
    For me though, the combo is Alopecia Areata, graves disease and eczema,
    So don't worry its probably nothing to serious :)
     
  6. hcrazy

    hcrazy Guest

    Re: Alopecia with positive ANA test -- do I have something awful

    Mandaloo- I also tested positive on ANA. I just keep getting told they can't rule out Lupus, and it get's ignored.

    I hope your Dr's are able to help you out soon.
     
  7. mandeloo

    mandeloo Guest

    Re: Alopecia with positive ANA test -- do I have something awful

    Thanks y'all. I'm only 29 I keep telling myself but I guess stuff like this doesn't discriminate. I have been having a painful existence for a while and I thought it was just me out if shape :(

    Oh well
     
  8. Janie-Ann

    Janie-Ann Guest

    Re: Alopecia with positive ANA test -- do I have something awful

    Not trying to scare you, Mandaloo, and you're not even sure yet if it is lupus or something else that's causing you to have a positive ANA -- but lupus actually can be a life-threatening disease -- certainly life-altering. Symptoms and severity will vary dramatically from person to person and while the picture has certainly improved compared to years ago, it is far from "completely manageable."
    Hope you have good luck and it's nothing serious. If your primary really suspects lupus, he or she will probably send you to a rheumatologist.
    Keep us posted
    :)
     
  9. mandeloo

    mandeloo Guest

    Re: Alopecia with positive ANA test -- do I have something awful

    Ugh I have an appointment with a Rheumatologist on the 19th. It was the first thing he did, was send me there. :(

    This sucks

    At least I don't have that face rash which is a good sign yeah? Usually people with lupus have the rash?
     
  10. Janie-Ann

    Janie-Ann Guest

    Re: Alopecia with positive ANA test -- do I have something awful

    Maybe the rheumatologist will have good/better news.
    About the face rash... it is one of the signs/symptoms but just one. For years I co-led SLE support groups through the Arthritis Foundation and got to know many, many women with SLE, plus I had two very close friends with it -- and I only saw the "butterfly" rash on one or two people ever. I don't have it myself. Glad to hear you don't either!

    Have you visited the lupus.org site? It's pretty interesting, with accurate and up-to-date information. There's a lot to read there -- and it's easy to get freaked out -- and you don't even have a definitive diagnosis yet (also not easy -- it's not like there's one test and either it's positive or negative, it's kind of like fitting together the pieces of a puzzle.) Also, even if the rheumy does think lupus, within that diagnosis there is so much variability. Not everyone gets every symptom or manifestation and if you do have it, YOUR lupus is going to be different from anyone else's.
    Check this out, if you want
    http://www.lupus.org/webmodules/webarti ... zoneid=524

    This is a good article, too, talking about other symptoms that would point to a lupus diagnosis. You're supposed to have four going on at the same time... http://www.lupus.org/webmodules/webarti ... zoneid=524

    Please try not to stress yourself too much before you really know what's going on. Save your physical and psychic energy for when there's a clearer picture. And don't think "worst case scenarios." (believe me, easy to do :)

    I'll stop overloading you with links (I promise, LOL) And all of this may be totally premature, since you don't know yet -- a positive ANA alone isn't nearly enough. (and even that, was it a high titer, was it positive on a repeat test, speckled, etc., etc.)

    Hope I'm not freaking you out -- just trying to be helpful. Hang in there!
    Hoping for the best...
     
  11. hcrazy

    hcrazy Guest

    Re: Alopecia with positive ANA test -- do I have something awful

    Anybody here get the Reynouds Syndrom where the fingers lose circulation? If I get just a little cold, I get it right away, I have poor circulation, so I alway's thought it was that.
     
  12. mandeloo

    mandeloo Guest

    Re: Alopecia with positive ANA test -- do I have something awful

    The titer was 1:40 and speckled

    Thanks for the links ;)

    Of the symptoms I saw I only have hair loss, positive ANA, pains in my body (a lot in my neck) and a red blood cell count that barely made it to normal range. Normal is 3.80 - 5.10 and mine was 3.86

    I also seriously suffer from migraines. I'm actually going into an MRI now to see what's up. It's been going for years but just now got excruciating enough to see a doctor.

    My hair loss is getting worse :(
     
  13. Janie-Ann

    Janie-Ann Guest

    Re: Alopecia with positive ANA test -- do I have something awful

    Yikes -- posting before going into an MRI. You're a multi-tasker!
    The tests are so frustrating -- you want them to find SOMETHING, but nothing serious, something treatable and curable to explain, validate and finally remove all the symptoms. Good luck with the MRI and headaches. Sorry to hear the hair loss is getting worse. If that's from lupus, there's always the possibility that once the disease activity gets quieted down or you go in a remission, then your hair will return to normal. It's not necessarily a done deal that once it's gone, it's gone.
    Hope it works out :)
     
  14. mandeloo

    mandeloo Guest

    Re: Alopecia with positive ANA test -- do I have something awful

    hey yall here's an update:

    I went to a headache neurologist and he did some further bloodwork, including a comprehensive ANA panel, metabolic panel and MRI/MRA

    In my blood was a high titer (or marked high on the lab report) of the RNP antibody with the absence of every other marker for AI diseases. On the lab report it said this means I have mixed connective tissue disease. I guess the main disease rearing its head right now is lupus, and the scleroderma and polymyositis will eventually catch up. Not sure though since I still havent seen the rheumatologist.

    My Neurologist said something about my MRA showing I had an artery or something in my brain that was too small. I think that's what he said I can't really understand him well because of his accent.

    I have a low Vitamin D and he said low B-12 even though it's "in the normal range."

    Basically I'm a big ole mess! I've read that the life expectancy of someone with MCTD is 10 years and others that it's normal if caught in time. Still don't know but I do know where my hair loss is coming from now! That's a plus.
     
  15. Janie-Ann

    Janie-Ann Guest

    Sorry to hear this
    (((( hugs )))))
    You said "at least I know where my hair loss is coming from." Isn't that something -- how a diagnosis, even a potentially serious one, can be somehow weirdly comforting. At least you're moving out of disease limbo (and out of that infuriating "it's all in your head" stage.) And it can be easier to learn and take action once you know the "enemy."

    Maybe you'll still be lucky and not get every manifestation. I **think** MCTD means you've got overlapping symptoms of other auto-immune things, not necessarily that you'll progress to get all three. Like you said, the internet info is all over the place, from dire to saying it's like "lupus lite." I wouldn't believe anyone or any site that claims they can accurately predict the progression of lupus-like disease activity or YOUR path. With connective tissue disorders, there truly is so much variability from person to person, in terms of severity, flare and remission patterns, etc.

    Maybe there's a support group near you or an on-line forum? So you can talk other women going something similar?

    Hope the rheumatologist is good -- and that you like and respect him/her. Because "chronic" illnesses are, well, just that. And you're going to be in partnership with your doctors like never before...

    Funny what you said about the neurologist's accent. The guy I had been seeing is Chinese, with a very strong accent. When he was explaining test results to me I kept saying, "Excuse me?" "Huh?" "What??" At the end, I just asked him to send the written report to my primary and send me a copy as well.

    Will the neurologist be able to help with the migraines? That must just suck.

    Wishing you good luck. The rheumy is on the 19th, right? This will probably be a long week for you... Try not to stress out even further.
    Best,
    J-A
     
  16. mandeloo

    mandeloo Guest

    Thanks so much J-A, you've been an incredible source of help to me. I've cried my piece for now and looking into dietary changes to optimize my health so I won't get hypertension or infections if I can help it. I'm not sure if that will actually help but I'd like to keep my kidneys functioning well. The numbers were within nOrmal range but on the high side. I'm growing to hate labs! Haha

    Now I just have to explain to my mother (who by all means thinks doctors are making this up and shes a nurse!) an d my husband who flip flops between assinine comments like "well I guess since you're debilitated now we have to get some help around here because nothings getting done obviously" and "you're going to be ok, everythings fiiiiine"

    I can understand though, it's not easy dealing with someone whos sick or accepting that your once exciting, wonderful wife is now not so great. It still hurts. it's funny how a human being still has a gut primal reaction to cast the defective one out. Guess there's no real breaking that animal in us.
    Anyhow, I'm assuming AI related hairlosscan be helped with steroid scalp injections?
     
  17. Janie-Ann

    Janie-Ann Guest

    Glad I'm helping. I was afraid I was coming off as trying to be a know it all...
    Good you're taking steps to make healthy choices. Control what you can...
    Yeah, other people's reactions are weird sometimes. I guess they have to process it all too. Interesting observation about casting the sick one out... Having a non-visible "disability" cuts both ways -- you can "pass" when you want to/need and not have to deal with all the "oh poor you" stuff -- but then you have people who don't see anything obviously wrong and think it's all in your head. Personally, I think the insensitive comments and reactions are all based on their fears, fears for you and also a way of telling themselves that it could never happen to them because they [fill in the blank].
    Steroid injections may help/may not make any difference. I'd shoot for getting the underlying disease under control/quiet/into a nice long remission and the hair could resolve itself.
    Keep us posted
    :)
    PS: take your husband up on the suggestion of "getting some help around here" First, that might shut him up ;) and you may actually need some help, especially now that your head is still spinning
     
  18. Vlal

    Vlal Guest

    Re: Alopecia with positive ANA test -- do I have something awful

    :agree:
     
  19. Vlal

    Vlal Guest

    :grouphug:
     
  20. Janie-Ann

    Janie-Ann Guest

    Today's your rheumatologist appointment?
    Wishing you good luck.
    Hope you two hit it off and he/she is helpful, smart, compassionate -- all those things.
    best,
    j-a
     

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