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Old 11-25-2008, 01:48 PM   #1
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Can neg. Anti-ds-DNA or Anti-Sm turn positive?

I've been having a terrible time of it for the past year. Have a positive RA Factor and all my other tests are coming out negative. One rhuemy thinks I have RA and another rhuemy says I don't. All my joints hurt. Had whole body bone scan which showed degenerative joints (all my joints). I also have terrible pins/needles that sting awful throughout my entire body and a heat sensation from my skin. No fever. My liver enzymes are elevated, bun and bun/creatine level getting to close to high but still within normal limits. My ferriton went to 8.5 and now on 50,000 IU Vit.D each week. CBC suggesting anemia. So...I have NO idea what I may have! I do know I feel pain and sick. I'm also getting some buzzing feeling in my head now and then and sometimes my vision gets blurred. Don't know if this happens with rheumatoid arthritis or lupus.

My anti-ds-dna and anti-sm had come out negative in the spring but it was never repeated. Wondering if these tests could become positive or if once showing neg. , then does it remain negative?

Getting an emg and ssep from the neurologist but they don't have time to do it until Jan.09. Geezzee.

 
Old 11-27-2008, 12:08 PM   #2
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Re: Can neg. Anti-ds-DNA or Anti-Sm turn positive?

Lori,

Unfortunately, all the autoimmune diseases mimick each other. What you described sounds like it could be lupus or actually MS. I know that you can test positive for RA and have lupus, but I'm not sure if that's true for MS.

From the research I've done, losing your vision and having pain with eye movement points more to MS. Good luck in your diagnosis--I know that sometimes not knowing is worse than hearing the news about what you have.

Tricia

 
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Old 11-28-2008, 06:03 AM   #3
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Re: Can neg. Anti-ds-DNA or Anti-Sm turn positive?

Lori, I'm just a patient, of course. But I hope your doctors' list of possible conditions includes antiphospholipid syndrome (APS). It's one of 3 "sticky posts" ( = permanent info posts) you can read here, all at the top of the thread list. Those "stickies" are a good head start, so you could study all 3.

Hopefully you're being tested for MANY autoantibodies, not limited to RF, anti-ds-DNA, and anti-Sm. There are quite a few others possible in lupus &/or "close cousins".

I *think* anti-ds-DNA can rise/fall, while anti-ds-DNA isn't as tied to flares. You could ask.

Regarding your X-rays that showed widespread joint degeneration: Were so-called "mouse bites" seen? That's the phrase Dr. Daniel Wallace uses to describe the damage RA does. Look for his excellent lupus hardcover, which is in most libraries. FYI, in addition to lupus, he discusses "close cousins".

Hopefully your doctors call for urinalysis & are also paying attention to your kidneys, given elevated BUN and creatine.

I think there are quite a few things that can cause anemia. You could ask if all are being considered.

Re: elevated liver enzymes, other than various types of hepatitis & reactions to certain drugs, I don't know how many things cause it. I'd definitely ask!

If you think you aren't getting clarity, well, sometimes it pays to seek doctors who presumably have the most sophsticated & recent knowledge. I ended up seeing a teaching hospital-affliated rheumatologist, who also sent me to a dermatopathologist for one last skin biopsy. I was both pleased & depressed to find them both SO SUPERIOR to almost all the local doctors I'd been seeing for years.

I hope this helps a bit. Keep us posted, OK? Best wishes, V.

 
Old 11-28-2008, 11:22 AM   #4
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Re: Can neg. Anti-ds-DNA or Anti-Sm turn positive?

Hi V,
Actually, the rheumys that I saw are all teachers in the Medical Unviersity. One has his office at the hospital (who didn't give me any tests).

You mentioned urine testing. What should they look for?

 
Old 11-29-2008, 07:27 AM   #5
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Re: Can neg. Anti-ds-DNA or Anti-Sm turn positive?

Lori, Where lupus is a possibility, I think elevated B.U.N. and creatine in bloodwork are signs kidneys aren't filtering properly. (I just reread your original post & realized you said those values were NOT QUITE out of range.) And urinalysis includes checks for "urine casts" and for protein in the urine, which are also signs of abnormal kidney function.

Have they given you any meds? Another thought about meds: were you on any meds before this all started? I wonderered because there is a kind of lupus called "drug-induced", abbreviated DILE, that causes many of the same things seen in SLE. The "good thing" about DILE is that, most of the time, when the offending drug is identified & discontinued, symptoms disappear.

Have you read up on how RA is diagnosed? I think it's somewhat similar to the "Chinese menu" criteria for SLE. i.e., it's considerably more than simply a positive RF. If I were in your shoes, I'd probably read about both lupus & RA, and try to see whether you've had all tests appropriate to the band of problems you've reported. But one difficulty is that either condition sometimes emerges slowly, which can mean repeat tests, multiple doctors, etc. I was a "slow emerger", so I can sympathize with your frustration!

Again, the Daniel Wallace hardcover was eye-opening for me, so I really recommend it. Also, Dr. Robert Lahita is another terrific source. Best wishes, Vee

P.S. Anti-ds-DNA & anti-Sm are included as lupus diagnostic criteria because they're so SPECIFIC to lupus. However, OTHERS are possible. (For example, mine was anti-Ro.) You could ask for copies of your bloodwork & make it a habit to ask each time you have any kind of test.

Last edited by VeeJ; 11-29-2008 at 07:35 AM. Reason: added P.S.

 
Old 12-29-2008, 11:09 AM   #6
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Re: Can neg. Anti-ds-DNA or Anti-Sm turn positive?

Just chiming in here... my lupus started out as Optic Neuritis w/Transverse Myelitis. It is a very unusualy presentation and they were sure I had MS too, but it ended up being lupus.

Erin
Dallas TX

 
Old 01-11-2009, 07:53 PM   #7
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Re: Can neg. Anti-ds-DNA or Anti-Sm turn positive?

Lori....you mentioned burning skin and I have that frequently from the peripheral neuropathy caused from the Lupus. I also have elevated liver enxymes with active flares. My Gastro tested me for Hepatitis B and C and they both came back negative and he indicated his feeling was that it was autoimmune hepatitis from the Lupus, however, he never did a biopsy like my Rheumatologist wanted him to do so that has never been clarified. But since it is a constant problem and only when i am in active Lupus I have to assume it has something to do with the Lupus.
I have Fibromyalgia as many of us do along with the Lupus and I can always tell when a flare is coming on and how bad it could be based on how painful my body is. If I can't walk or climb a couple of stairs it is a pretty bad flare, but if I am sore but still able to walk at least around the house it will be more tolerable. Since this disease is autoimmune, It's impossible to tell what our symptoms might be and how long a flare will last. For me, i try to avoid stress at all costs and staying out of the sun and heat is a MUST!! Shopping with florescent lights makes me very weak, brings out the neuropathy and I get horrible blurred vision. These same things happen to me in the sun. I have a butterfly mask all the time but it gets much worse in a flare when I look like I have gotten a very bad sunburn. Just being out shopping or in a car on a sunny day leaves me feeling like I have a flu and a low grade fever the rest of the day or even a few days.
For myself though, when I am in active Lupus my symptoms can be 1 thing for a week or so and then change to something else and continue in that pattern until it eventually clears up, sometimes lasting for many months and taking several different antibiotics, steroids, puffers, etc. But life is good and I try not to think about it and I especially don't like to complain and talk about it all the time. I find to be a turn-off when someone else does that to me and I don't want to be reminded of it on good days. There are so many worse things we could have and having Lupus isn't a death sentence for the far majority of us.

Connie

 
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