I'm going back Monday to the rude Rheumy that I saw a couple weeks ago who ordered a bunch of blood tests.. another ANA being one of them. I've never looked at my past ANA titers, so I'll have nothing to compare it to.

I want to go to him ARMED with information just in case he blows me off again - and I'll also have my hubby with me, who is not the quietest person in the world when it comes to doctors treating me like I'm a wacko..

I keep reading SO many different things about what is a normal ANA and what's not.. this is one of them..

Reference Interval
Negative: <=1:40
Borderline: 1:80
Positive: >=1:160


And this on another website....
"Patients with an antinuclear antibody titer of 1:40 and characteristic multiorgan system involvement can be diagnosed with systemic lupus erythematosus without additional testing; however, patients with an antibody titer of 1:40 who fail to meet full clinical criteria should undergo additional testing"

And of course, I've found different values as well.. I won't post them all, I'm sure you get the picture lol

So you see, I'm finding different numbers and it's just confusing me. I'm going to DEMAND a copy of my blood work from this meaniehead. And then when I go back to my regular doc, I'm going to request the copies of the others from her.. I'm sure she won't put up a fight at all. I just want to know what I'm looking at and if he tells me that the ANA is negative, which it could be, I just want to be able to verify that myself.

I want a friggin diagnosis.. whether it's Lupus, Fibromyalgia, or Lyme disease (those are the 3 main things they're considering). I DO have many symptoms of Lupus (rashes, mouth ulcers, muscle and joint pain, etc), but this doctor swears that you CANNOT have Lupus without a positive ANA.

Can you help me to understand? I mean, do different labs just have different titers they go by to know what's normal and what's not? If it's any help, I went through Quest Diagnostics this last time.

Thanks :)

Dee, I'm not going to speak to your ANA questions, as others here (AngelicBrat, etc.) are more conversant.

I just want to say that I finally got my Dx only because of *skin biopsy* results, and only when those were done by a teaching hospital dermatopathologist. I am ANA negative and autoantibody negative & have been all along because I am in a SUBSET, the intermediate one = SCLE, where ANA & autoantibody odds both are roughly 70/30.

My local doctors insisted that I needed positive bloodwork to get Dx'ed. Not so for THIS SUBSET... As far as how lousy you can get with this subset, you can have the full range of SLE symptoms, with the biggest problems possible but in lower probabilities. I was actually a "4" on the "4 of 11" at time of Dx.

So my thought here is this: ANY CHANCE at all that your fits the characteristics of an SCLE rash as oppsed to the malar rash? If so, *maybe* you need to find out if your doctors have ever even heard of SCLE.

This is one ugly thought, but none of my local doctors had---shockingly, incl. a local dermie who is also on staff at a Manhattan teaching hosp., whom I'd paid out-of-pocket in order to go to the "best". :rolleyes:

I hope you two (you & your noble hubby) make out with "Dr. Rude Rheumie". I used to take my husband with me, too. Awful feeling, isn't it, to need "muscle" to see a doctor?! All my best to you.

Sympathetically,
Vee

Veej, thanks :)

The rashes that I get are always on my upper torso. Mostly on my upper arms, sides, and upper back at the neckline. They're red patches, some are big, some are small, some are raised and kind of pimply looking, others are flat, scaly, and light red. They're all round, but one which is more oblong that's about 3 inches in length. None of them itch at all.

I haven't even shown them to any of the docs yet because I never suspected anything but really dry skin or something. So I'm going to let the Rheumy check them out Monday. And then maybe see a dermatologist.

If this rheumy doesn't figure it out or whatever, I'm going to Cleveland to some teaching hospital there. My regular doc has already mentioned that she would like to send me there. SO I guess that's the next stop if we don't get anywhere with the quackyidiotmeaniehead. :)

Hi...I want to say don't settle or a fibro DX only....fibro does not cause joint pain. BUT a Lupus dx can take time for all the things to show up.

As far as the titers, I have seen 1:80 being considered a pos ANA for a diagnosis, I don't think that 1:40 would though.

Mine started at 1:80 and now a year later is 1:640....

Oooooooh, Dee74!

You seem to be describing something that sounds VERY MUCH like the rash I had for many years. It started in the early 90's, as welts that looked like mosquito bites. About 4 years of this, roughly every three months. Interestingly, I was getting more summer sun than I'd had since my teens.

Then the welts would appear and "morph" into big red rings. The very first red ring I got was on my back: local dr. treated me for Lyme. I was so sick the day it bloomed, I thought needed hospitalized: shivering, shaking, burning with fever, pain all over, dizzy, huge headache, etc. Then the rings started appeariing on upper arms, underarm area, shoulders, etc. NEVER on my face: nada there.

I had the ringlike rash format for four more years before being Dx'ed with SCLE = subacute cutaneous LE.

FYI, demographically, SCLE favors women (like the other lupus types), esp. those of W. European descent. Median age of onset is something like 43. Rash favors *upper torso*, but rarely appears on the face, too, though. (I howled when I read this data, it fit my situation so perfectly: I'd nailed *something* right! :D )

If you use your browser to look up SCLE, you can find pics. Look for the dermatology websites, ones written in "medical-ese". See what you think, just from a visual standpoint. (Biopsies still required, of course...)

Last I knew, Cleveland Clinic still enjoys a great rep. I was born & raised north of Pittsburgh & knew people who went to specialists in Pgh. & Cleveland. You do have good choices, Dee. So---regards & best wishes & good luck, from Vee

Hi guys,

I want to comment on the ANA titer stuff because it hasn't been fully addressed in this thread. ANA titers vary from lab to lab, that is the first comment I have. Depending on the procedures that labs use, they will say that different values are demonstrated. The ELISA ANA test generally says that a mild positive result is over 1:40 (with 1:39 being negative). Most Rheumatologists like to see ANA's above 1:160 for diagnosing Lupus.. that is why they will retest an ANA several times to see if the titer raises. Another comment I have is that a negative ANA has no pattern seen. So if you have an ANA that is positive on the scale listed by the lab, it will have a pattern. It can say something like "rimmed" or "speckled" or "homogenous" etc. Depending on the pattern, the ANA can help diagnose different autoimmune processes.

I would like to add too that I found out at the Conference that the ANA is not as reliable as they think it is. Many Rheumatologist's won't even use it, or if they do it does not hold as much weight as many other immunological tests. They will rely more on the Rheumatoid Factor, C3 C4, Anti-RO, Anti-LA, Anti-dsDNA, Anti-SM, etc. They find that the ANA is NOT reliable. Remember that every lab is different so that one person's 1:40 titer may be positive at their lab whereas it may be negative at your lab. Every lab is different and uses different techniques. Take care guys!

~Luv, Angelic

They find that the ANA is NOT reliable.>>>>

Even an ANA of 1:640???? UGH...I feel like if they disregard that, I will never get a DX :(

I have a borderline ANA also at 1:80 and 1:160 as well as moderate to high Sed rate and hypergammuglobulemia, false-positive lyme. Those are really my only abnormal labs. Physical symptoms are inflammatory arthritis, rashes, fever, fatigue, raynauds and brain fog.

I have been diagnosed with UCTD and Fibromyalgia. Even though I don't fit snugly into one classification, I am still receiving the same treatment as for other AA diseases with Plaquenil and Prednisone. It works pretty well.

Why is it so important to have a pat diagnosis if you are being treated for a connective tissue disease.

I have been sick for over 17 years and, yes, things have become worse. However, my Rheum. says I will probably always have an Undifferentiated disease because for all of these years it has not become defined.

I don't care one way or another. I am just glad to be treated properly for it.

Mere --

Why is it so important to have a pat diagnosis if you are being treated for a connective tissue disease.

Mere --


Mere, it's important to me because I'm NOT being treated for anything. The only thing's I have been given is Elavil, Flexeril, Hydrocodone, and a couple others (not at the same time). Basically treating the symptoms.. and rather uneffectively. Doctors up here won't treat something when they don't know what it is. Therefore I NEED a diagnosis. At this point, I almost don't even care what I have, I just want to treat it correctly.. otherwise, I have no hope of a normal life.

I understand... I was not being treated properly until only recently when I found a 'good' Rheum. that decided to go out on a limb and try a couple months of Prednisone.

It is discouraging and frustrating, to say the least.

Perhaps you can suggest a short-term (no less than 2 months) trial of the Pred. at your appointment Monday.

My response to having a pat diagnosis was in response to lovemythreeguys2000

"They find that the ANA is NOT reliable.>>>>

Even an ANA of 1:640???? UGH...I feel like if they disregard that, I will never get a DX"

Wishing you well.

Mere --

Sorry Mere, I wasn't trying to sound mean or that I had gotten angry with you or anything :)

I'm just irritable and overly anxious to get a darn dx. Whatever is wrong is just getting progressively worse lately. It's like I go through bad flares or something and with every flare comes something new.

Recently, a few days ago, my lower back started hurting really badly. It's a pin and needles type of pain with a slight numbess in my upper buttock area. My calves also started tightening up ALOT.. yet they don't feel hard. It just hurts to straighten them out. I haven't overworked them or anything.. nothing out of the ordinary. I'm not sure what's going on with that. I'm just waiting to bring it up to the Rheumy.

I'm also REALLY shaky this morning. Just my hands though. It happens sometimes, but it's not normally this bad. As long as they're resting, they're fine. It's just when I try to reach for something or hold onto something. I haven't had any more caffeine than normal.. just my one cup that I have at 6:30am every morning.

AND I've had a freakin twitch in my right thigh since yesterday afternoon.. it won't quit no matter how much I massage it or stretch it. Now it's also in my calf, same leg. Just massively annoying. :(

Grrrr

I did't feel that you were mean or angry - just frustrated and that is completely understandable. It sounds like you are having a flare right now.
Please write everything down on paper for your appointment Monday, no matter how insignificant it may seem.

Perhaps you have Fibromyalgia complicating things. I have that also and I get flares of it right along with the UCTD. It makes me feel bruised all over and I also get the twitchy, jumpy sensations you describe. I have also had some peripheral neuropathy along with these problems.

What has helped me is a calcium/magnesium/vit.D (highest doseage available) 2 x per day. Also Verapamil (a calcium channel blocker - 240 mg 2 x per day). The Verapamil quieted my tachycardia, helped the neuropathy and other weird neurological symptoms and also helped the Raynauds.

There is a blood test to check your magnesium level. It is common to be deficient when an autoimmune process and/or Fibromyalgia is present.

I completely understand. It took 17 years for a rheum. to acknowledge that I had an autoimmune process occuring - although undifferentiated.

Wishing you the best.

Mere --