This is my first post here as I haven't been diagnosed with Lupus but there was a question as to whether or not I have it due to a malar rash and hairloss. I had bloodwork done and my ANA was negative at 1:40, had antibody testing done for Anti-Smith, Anti-Ro, Anti-SSA and SSB. All of the antibody testing came back negative. I know that the ANA can change over time but can you tell me if the antibody testing can become positive at a later time?
Does having all those tests come back negative mean I definitely don't have lupus? I already have a diagnosis of MS so some symptoms that I have from that are symptoms that I've read you can get with lupus also but not the malar rash or hairloss that I'm aware of. Oh, and I had my thyroid tested and those tests were normal as well. Those of you that have hairloss, what do you do for it? Noticing that my hair is getting thinner is really worrisome to me.
My ANA always comes back normal, but my rheumatologist and primary treat me as if I have Lupus, because of the symptoms. For the past 4 years my symptoms have been discoid lupus (skin rashes) and severe joint pain. Discoid lupus will cause round red patches on skin and scalp which will cause you to lose hair in spots. This normally does not grow back. Thinning hair could be do to the medications you are taking as well as Lupus or MS.
You could eventually test ANA positive or never. The important thing is to have symptoms treated as they appear to prevent organ and joint damage.
I am on Plaquenil (hydroxychloroquine) 200mg, 2x daily which is the drug most rheumys will put you on for Lupus, and because of a flare up of inflammation in my joints I am also on 5mg Prednisone daily, along with other various medications for other symptoms.
Yes, ANA & antibody findings can change over time. If symptoms persist, more tests are typically performed.
I had episodes of hair loss for years, accompanied by weight loss, fatigue, pain, neuro-like tingling & clumsiness, migraines, GI upsets, urinary stones, etc. Most visually dramatically, though, was the annular (circular) nonscarring rash I had on upper arms & back. It didn't even strike me at first that I had become photosensitive, as the rash initially would appear weeks after summer sun exposure.
Well, HA... I finally grew sick & tired of my suburban drs. and took myself to a teaching hosiptal rheumie. It was only then---after 4+ years of a full-blown rash & the prior 4 years of a "junior" rash---that I turned Ro-positive. The Dx was SCLE = subacute cutaneous LE, which is the intermediate form of SLE. SCLE is worse than DLE (discoid lupus), in terms of symptoms, but often is not as severe as SLE (systemic lupus). It's very name, "subacute", suggests that it can have a long & slow trajectory.
I try to go easy on my hair: handle gently when wet, blow-dry gently, etc. I do color it (I'm 53 years old now, ) but will give that up if I have to. Much of my breakage is along the hair line, but I do find "cowlicks" on the crown sometimes. Also---you must wear hats in the sun, like it or not, if you have suspected lupus...
My ex-Dr had been treating me for my back injury with pain meds for years, and even though I had started complaining of other joint pain, and getting more and more tired she never tested me out for anything. We moved Jan 04 and I found a new Dr told her of all my symptoms and she tested my blood and it showed I had a high ANA and sent me to a Rhuemie. He tested me again and said I had an extremely high ANA, so after answering a lot of questions he said most likely Lupus, and now after more symptoms such as losing more hair, fevers off and on, always feeling like I am going to have a cold, sore throats and sore in the roof of my mouth he Dx'd me with Lupus. I was not happy of course, but at least all my symptoms had a name and asn't just from over working. I applied for SSD because I can't do my work anymore as I also have a back and neck problems and Dr said firbronmyalgia. I just applied earlier this month and have been reading about what to expect.
My ANA has always been negative along with all the other usual tests. I was first diagnosed as probable MS but have had 2 well respected neuros at teaching hospitals rule that out.
After nine years of searching I finally found a rheumie who will treat me for my symptoms and not for my lab results. He calls me undifferianted connective tissue disease. That means I have something he just isn't quite sure what. I don't care though because I am getting treatment now with prednisone and plaquenil. I hope I am on my way to recovery.
My rheumie told me that 5-10 percent of patients can be sero negative but alot of doctors forget that fact. I am glad that I have him.
My hair has begun falling out. I don't know if it's from the meds or the disease. It has taken me two years for it to finally grow to my shoulders. On Friday I took the plunge and got it cut short. It's a cute style and everyone likes it but I miss it being longer. I don't have to use a brush to style it. I just run my fingers through it while drying it and it looks all whispy. A brush can do alot of damage to thinning hair so be careful with that.
I am just starting to get the hair falling out thing. It kind of worries me, cause I have always had plenty of hair. When I was young I use to have more than one person really needs of course as you age it does get thinner but still always had plenty. Now it is falling out and it is only the hair on my head. I know it isn't thyroid cause I finally got that under control.
Anyway sorry to go on like that, I have had positive ANA until I went on medication and then it came out negative everytime after that.
I meant to say this earlier. I know one other woman who had the same sort of rash I did. Like me, she tested negative for ANA and anti-Ro for a very long time. But she finally tested positive for ANA, anti-Ro, AND anticardiolipin. So she has antiphospholipid syndrome (APS), a blood disorder (clots), in addition to the lupus.
I mention this only because sometimes people with APS &/or lupus have some MS-like neuro symptoms. I did with "just" the lupus (e.g., tingling), so much that if I hadn't had the rashes, I'd have thought it was MS.
If you have been formally Dx'ed with "for-sure MS", then please IGNORE THIS totally, OK?! I just thought I'd throw it in, for what it's worth. Best wishes to you, Vee
Yes, my MS was diagnosed by 2 MRI'S of my brain, and a spinal tap. I've very confident in that diagnosis. My doctor now says I'm my own worst enemy as I'm a nurse and have always had to research things it seems so that I get the proper tests. I feel bad for people who are just too quick to go along with whatever their doctors says. We know our own bodies better than they do. I'm on disability now unfortunately due to the MS symptoms.
Dear PixieGirl, Yes, I do know about nurses. e.g., my stepdaughter & a very close friend also.
I wish I'd known MORE nurses along the way, actually. Some of them might have given me insights my drs. didn't. I suspect my mom (now deceased) had APS. She had many of the symptoms listed on the APS "sticky post" at the front of this Board. She was on Coumadin for years, due to thick blood; but no dr. ever used any special name for her wide band of problems. It wasn't until I was Dx'ed with lupus that I learned also of APS, and of the variants to SLE, too. (I never had a malar rash, my ANA was negative, etc.)
Anyway, I hope you are holding your own, PixieGirl, & that things stop with the MS. You've certainly got more than enough to deal with already... Best wishes, from Vee