What is a low ANA? And Lupus question

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LadyTsuguri
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Date Joined Jan 2009
Total Posts : 17
   Posted 1/14/2009 10:36 AM (GMT -7)   
I'm confused and a bit frustrated. I've been going back to my rheumatologist because I had a checkup yesterday and my doctor said he saw the butterfly rash, and every time I've gone to the rheumatologist he didn't see it, so the doctor told me to go back and see my rheumatologist and he said it is the butterfly rash and it's consistant with lupus which he ruled out earlier. Another doctor diagnosed me with Fibromyalgia, and now my rheumatologist suspects lupus.

Now my question, my mom is the only one who saw my ANA titer, I didn't get to peek at it, and she said it was 20. Is that low, normal, is she remembering wrong? I thought there had ot be a 1:, I'm new at this sorry. As far as ANA tests go anyway.

I've been having tests done a lot, and he said my lupus titer was negative, so why do I have the rash? Can I have lupus and the test be negative? He said when he had the tests done yesterday that he was looking to see if the lupus was internal? What does that mean? Thanks for your input.

straydog
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   Posted 1/14/2009 10:47 AM (GMT -7)   
Lady only thing I can suggest because I am new to the Lupus thing is if you have a good camera by all means take a pic of the rash to show the rheumy. My rheumy says the rash does not always have to be a deciding factor. Susie


peacesoul
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   Posted 1/14/2009 1:27 PM (GMT -7)   
What are your other symptoms?
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Diagnosed with lupus and lyme disease in 2007. Treated the lyme for 5 months with abx. Now treating my lyme and lupus 100% naturally. I believe lyme caused the lupus.
 
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Piffle
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Date Joined Jan 2009
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   Posted 1/14/2009 8:04 PM (GMT -7)   
Lady,
I was under the belief that a normal ANA titer was 1:40 or below. I average about 1:80, but it is not always consistent. I was diagnosed with lupus 5 years before my titer became elevated. There are other indicators of lupus that are more telling then the ANA titer. Maybe you ought to keep track of symptoms until your next visit to the doctor and take it with you. Rosacea can somewhat mimic the butterfly rash. Has your doctor ever taken a biopsy of the rash? Maybe what your doctor means by looking at an internal lupus is through looking at possible inflammation internally. THis can be by finding your SED rate, checking the functions of various organs, joints, etc. Maybe you need to keep a list of questions also to ask your doctor. Hope all goes well and you get some answers.
Piffle

jhmom
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   Posted 1/14/2009 8:18 PM (GMT -7)   
Hi Lady, some doctor's don't even consider an ANA of 1:80 to be positive, depends on the doctor. I would be interested in your other symptoms which makes you suspect lupus. The rash you are experiencing could be Rosacea, like the others said it would be a good idea to take a picture of it to show the doctor. THere is not just one blood test to dx lupus, there is a criteria list that doctor's use to help them in the process, generally if you have 4 of the 11 they will consider lupus. Lupus is like a big puzzle they have to put together one piece at a time. They look at your labs, the criteria list, other symptoms not on the list and family history of AI diseases'. Good luck, I hope you get some answers soon.

Here is the list - www.lupus.org/education/topics/outcome.html
Stacie
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peacesoul
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   Posted 1/15/2009 7:49 AM (GMT -7)   
the only problem is rosacea does not come and go like she is explaining. Her's sounds more like a rash?!


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LadyTsuguri
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Date Joined Jan 2009
Total Posts : 17
   Posted 1/21/2009 8:36 AM (GMT -7)   
Hey you guys, thank you all so much for your responses.

I went in the other day and got my tests back and they were positive for lupus. I'm going in for a CT scan Friday, and I have to drink some dye stuff (I'm worried it'll taste really bad). I've been pretty down ever since my doctor visit but it's not like I'm just now experiencing the discomfort lupus brings. So, at least I'm use to that, somewhat. ]:

Also, I guess the ANA titer wasn't right, my mom was reading the wrong thing. He said they don't have numbers at that clinic to show how high or low it is, so I don't know what my ANA titer is.

My mom thinks I had it since I was little because I would get the rash then, whenever I was out in the sun or cold. Is that possible? Is there like an age group or can you get it when your really young.

I just want to say it's nice to have support from such a helpful group like yourselves, and I really appreciate all your feedback. It's hard trying to explain what you feel to your family, my mom is understanding, but my siblings are quite off about it, they always say because I don't look ill I'm faking it. I've basically been dealing with that since I was little so, it's not that I'm happy to be diagnosed I'm just happy to know what's going on with my body and why I'm having these problems. I'm sure you guys understand.

My rheumatologist didn't give me any medication or anything he said he basically wanted to watch it for a while and see what happens.

----

Also, some of you asked for my symptoms so here are some of my major ones.

Cognitive problems - Headaches/migraines, memory problems, harder time talking (like I'll forget a lot of names for things), very hard time concentrating on things. Which started in the last 2-3 years and is getting worse from what I can tell

Achey/sore joints - A real bad one for me, every joint has had aches, my knee's, elbows, ankles, toes, wrists, fingers, shoulders. And the aching can get so bad it'll make me cry. It feels like their on fire sometimes as well.

Low-gread fever/general ill feeling - I can't remember the last time I felt perfectly fine and I was able to do every day normal things. I'm achey and I feel sick in the mornings, and mid day I'm pretty good, but when evening comes around it all comes back and I'm extremely exhausted, and I don't do anything all day.

Abdomen discomfort - I've been having a lot of that lately, and a lot of it's been in my upper left side right under, or underneath my left rib. Does anyone know what that would be?

Chest pain - I'm going to the cardiologist in February for this to know exactly what's happening.

Fatigue - I get a full nights rest and pretty good rest during that time and STILL wake up exhausted, I would be able to go right back to bed and sleep for hours. (Which I do almost everyday)

I can't really think of any other symptoms right at this moment, but all these symptoms have gotten progressively worse within the last few years.

---

Post Edited (LadyTsuguri) : 1/21/2009 9:06:25 AM (GMT-7)


okie
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   Posted 1/21/2009 10:33 AM (GMT -7)   

Hi ladyT, I know it's frustrating. There is a lot to learn. I did want to tell ya incase no one mentioned it. There are people here who have a negative ANA that have Lupus and people that have a possitive ANA and don't have Lupus. Unfortunately there is no one test to make that determination. (I wish). I don't know how many things I have been diagnoses and undiagnoses with. If you are having a lot of problems that require meds you really need to let him know. Plaquenil takes a long time to start working and is one of the safest drugs that rheumys usually start out with. I think most of us are being treated for symptoms weather we have a diagnosis or not. If you are having problems so badly that it makes you cry than he/she needs to try somthing. You don't have to live in pain. Also you might want to get a second opinion. Drs aren't always right and some are more agreesive at treatment than others. I think I have been through 4 rheumies so far.

Let us know how things come out with the cardiologist.

hugs


 CAROL
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LadyTsuguri
New Member


Date Joined Jan 2009
Total Posts : 17
   Posted 1/22/2009 2:40 PM (GMT -7)   
Thank you okie, I know my ANA has always been positive every time he's tested me, my rheumatologist said I'm positive for lupus but I haven't seen the test results at all, since I know he's very thorough I'll trust his judgement.

I guess tomorrow when I have the CT scan, he's also having a skin biopsy to check for skin lupus, are they doing that on my cheeks!? Or what, I'm kind of freaked out.

Also, I've done research on Discoid lupus and I've never had any of the lesions or rashes it talks about, I've only had the butterfly rash.


Another thing, I heard women with lupus can have a bad flare up before their period, and when I was younger and first got my period, from then on, I get so sick I have to be hospitalized, I run 103 temp EVERY time, the doctors never figured out why that would happen. Would this be explained by it being a lupus flare?

Post Edited (LadyTsuguri) : 1/22/2009 2:58:24 PM (GMT-7)


Lord_Walters_Lady_Bug<3
Regular Member


Date Joined Oct 2008
Total Posts : 257
   Posted 1/22/2009 3:41 PM (GMT -7)   
ok lady you and i need to talk lol i have soo many of the same symptoms please email or message me i am very interested in hearing your story. i am a 21 yr old mom of a 19 month old lil boy and have had symptoms since 15. ironically my periods started then too. anyhow, i am not dx yet either and have had many tests been to one rheumy and pcp says im fine so im going through a new set of drs. pls message me when you can! email is mommaof1lilboy@yahoo.com take care! -Brit I have also posted on here about my symptoms if youd like to take a look.
*Wifey & Mommy*


LadyTsuguri
New Member


Date Joined Jan 2009
Total Posts : 17
   Posted 1/23/2009 5:27 AM (GMT -7)   
Hi Mommyof121, it's good to hear from you. [:

I'm sorry your going through a lot of the same stuff as me, I definitely feel for you. I'll of course email you, and look at what symptoms you've been having. Giving each other support and comfort is two of the best things that can be done right now. I'll email you in a bit!

Lord_Walters_Lady_Bug<3
Regular Member


Date Joined Oct 2008
Total Posts : 257
   Posted 2/9/2009 1:02 PM (GMT -7)   
hey there lady. just wanting to know how you are doing and if you ever got a chance to view my posts :) ttys and take care! hope you are well.

*Wifey & Mommy*

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