I was wondering if anyone can comment on my test result. Rheumy said she was very suprised that titer was positive 1:320 and that it may be false positive. She thinks my symptoms are more Fibro related(diagnosed Fibro 10 years ago) and that the patter of Nucleolar is not usually Lupus but Scleroderma and she has determined that I do not appear to have any symptoms of that. Two weeks ago she was absolutely denying the diagnosis from ENT of Sjogren's secondary with undiagnosed primary autoimmune. Now the Sjogren's seems to be an ok diagnosis and she will treat????
Any info/comments would be helpful as I am really confused, annoyed and angry!
You can be tested for very specific antibodies to systemic sclero, if you have symptoms. It is quite rare so they don't usually do the extra antibody tests for it without symptoms like Raynaud's, even with a nucleolar pattern. They are far more accurate than ANA patterns. Having said that, many Dr's, at least in the case of sclero don't consider a 1:320 titre positive proof of it. Also, many Dr's consider UCTD first before any of the other systemic sclero diagnoses because it is far more common and often never progresses beyond mild symptoms. I am only a patient though. Diagnosis is really such an art form, if you will and can take an excruciatingly long time. There are others here who have a lot of knowledge about these issues and hopefully they will chime in.
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Thanks, I am somewhat concerned because I had complained about shortness of breath and slight chest pains to my previous pcp for about 2 years and finally got tired of hearing her say "anxiety". So with that said, Rheumy wants pcp to arrange for chest xray and ekg. My last 2 ekg's on my annual physicals could not be completed because they could not get the leads to register correctly (that makes me a little nervous too now!) Glad to know it's quite rare so I will try not to worry about it.
I don't know how people go through years of this waiting for test results, going for additional tests, doctors that don't agree on things. It really is quite the roller coaster ride! It kind of freaked me out yesterday to see the ANA "positive" for something. Then today I was so angry that there is something that has just been dismissed and no tests for the last 2+ years, but I know that won't get me anywhere so I will try not to think about that either. Somehow I almost feel oddly relieved to know there is "something not quite right" and that maybe I should not continue to push myself when I feel I can't.
Boxermama, hi. I'm just a patient, of course. But in that context, I want to say "ditto" to the comments already posted about scleroderma. I don't think it's ever diagnosed solely on pattern! Also, I believe ANA patterns are somewhat "fuzzy", in that they're assigned by lab techs; and that pattern determination is an art, not a science. In other words, I bet different labs could arrive at different patterns for the same sample!
I think symptoms and labs count more, and I'm curious about your ENT's diagnosis of secondary Sjogren's. Was that Dx based on symptoms, a positive SSA (anti-Ro) and/or SSB (anti-La), a lip biopsy, or what?
I believe SSA and SSB can be seen in BOTH lupus and Sjogren's---so, if positive, a dr. needs to figure out whether you have lupus, or Sjogren's, or both. Mine were positive, but I was dx'ed with only lupus. The tests that narrowed my Dx to lupus were deep-punch skin biopsy with immunofluorescent stain tests. (I'd had years of photo-induced rashes, and those skin tests proved the rash was lupus-specific---and I met add'l SLE criteria as well.)
As for Sjogren's, I believe the most accurate test is lip biopsy (ouch!). But there are less nasty tests: Dry Schirmer's test (special tissue paper placed on eyeball to check volume of tear production) and Rose Bengal corneal stain test (looks for the corneal pitting & scarring that can occur in Sjogren's). I believe others here have had some/all of these 3 Sjogren's-specific tests done, so you could post again & ask, if you want more info on these tests.
As for your shortness of breath, etc., yep! I too had episodes of that & racing heart, plus all sorts of other stuff. As for my suburban doctors, yikes! Mine were woefully inadequate, nasty, snarky, and profane, too. Only the very last suspected lupus. For just my targetlike rash lesions on upper arms & back, I saw 8 dermatologists alone. For my other problems? Many "ologists" over the previous 15 years, incl. gastroenterologists, neurologists, etc. Anyway, I finally took myself to a teaching hopsital & got answers in less than 1 month. I'm doing much better now: Plaquenil and sun avoidance have helped a lot.
Speaking of teaching hospitals, I think that living on LI, as you do, you have some closeby, not to mention the many in Manhattan. And speaking of LI, I hope you've weathered the storms. It's been horrible here, and so sad.
Drop another line soon, OK? Sending my best wishes to you, Vee
Last edited by VeeJ; 11-09-2012 at 07:59 AM.
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Thanks! I believe you may be right about the teaching hospital thing. I chose and ENT at the local teaching hospital and he said Sjogren's was secondary when SSA/SSB bloodwork came back negative. He said I had so many other autoimmune issues(gastritis, ibs, reflux, fibro) that he really thought there was something "primary" that was not diagnosed, I then switched my pcp to teaching hospital dr and she seems better so far. ENT said if they couldn't find anything to come back in 3 months and he would do lip biopsy. I have had extremely dry eyes for 2 years and mouth for about 1 year (I didn't know it was medical, all my dental work might have given it away to ENT)
Unfortunately, I could not get to the teaching hospital Rheumy in a timely fashion and I went back to the one that diagnosed my fibro 10 years ago. I'm on the fence about her and when I go back to pcp next week I will probably ask if down the road we can get a second opinion from the teaching hospital rheumy (she would have to request the appt for me in writing),maybe I would even switch, I don't know yet, need to see how the next round of tests goes first.
I personally don't think there is anything as serious as Lupus going on. I just go through these periods of extreme fatique every few months but then I go back to what has become my "normal" just regular fatigue requiring about 9-10 hours of rest per night. However, this past time when the swollen gland started, it seemed as though the extreme tired came with severe headaches, swelling, ibs and gastritis all at the same time and lasted for 4-6 weeks!
Boxermama, interesting, more "dittos". I had IBS problems for 20+ years, deemed my primary problem, written off to Fibro, yet so severe I was hospitalized for dehydration & potassium imbalance (tests, too, of course). One of my hardbacks says 40% or more of people with lupus have GI problems (who knew?). Have you browsed your local library for hardcovers? There are several excellent hardcover lupus authors you could borrow.
Also had show-stopping headaches, from late 20's, almost always in spring & summer. On the dental front, my problems erupted just before 9th grade. Those overlapped a full year of pain, elevated ESR, depressed WBC, low-grade temp, and periods that lasted for weeks. (I was told much later that lupus loves hormonal shifts.)
The most "useful" thing I had diagnostically, my rashes, arrived dead last. But even before, as time went on, my episodes consisted of multiple problems flaring simultaneously---like your recent swollen glands + headaches + IBS + swelling.
Re: "severe" vs. not in lupus, your comment is interesting. That was my sticking point, too. My major organs (kidney, etc.) stayed OK. Between bouts, I looked more or less OK, but very thin. I never had the most classic hallmarks, like malar rash, anti-ds-DNA, or anti-Sm. I once read an article by a world-famous doctor in which he essentially said that, in the presence of such things, any doctor worth his salt can diagnose lupus. In contrast, the real challenges are the low-odds presentations and the "subacutes". But keep in mind that, in lupus, "subacute" merely means no major organ involvement; and that leaves a lot of NASTY that can occur short of major organ problems!
Have you seen the "alternative criteria" in the grouping of "sticky posts"? On my PC, the stickies are the group right under the board announcements & right before all the user threads.
Looking forward to your updates, so let us know what happens, OK? With my fingers crossed for you, Vee
Last edited by VeeJ; 11-10-2012 at 01:09 AM.
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Thanks for your input Vee! It really does help to have input from people that have gone through all the testing and have experience with symptoms. I am going to go to look for somesome books and start keeping a journal. I always seem to come out of a dr's appt with things I wanted to ask about and forgot to ask or didn't remember the answer that was given
I'm going to pcp on Wed to see what she thinks about test results and rheumy wants her to arrange for lung and heart checks, hope she's ok with that.
I did want to ask you about facial flushes. Did you ever have that happen? It's so weird how it just happens out of the blue, no warning and not any other part of my body is affected, just face.
Ps...are you from my area? We did fine with the hurricane and storm, but so many did not. Very sad and has a way of putting things in perspective.
Boxermama, I never had facial flushes; all my rashes were on upper arms & back. My sister's face flushed a lot, but it didn't really look like the malar rash seen in lupus; and she was eventually dx'ed with Hashimoto's thyroiditis. Oh! I forgot to ask if you've had thyroid tests run. Hypothyroidism symptoms can overlap with some seen in both lupus & Sjogren's, e.g., elevated ANA, joint pain, fatigue, swallowing problems, etc. Can't hurt to ask, and maybe have tests run to rule thyroid in or out, if you haven't already?
I'm a little northeast. Our Hudson towns flooded much more than the Sound shore, but the loss of life here was from falling trees, not flood. You're so right about putting things in perspective: so many lost everything & need help now, not later. Anyway, wishing you good luck this week with your PCP. Let us know how it goes. Sending my best, Vee
Hi all. Boxermama...I've had those awful facial flushes and when I get them a slight appears across the bridge of my nose and to my cheek. I would get them several times a day and usually I would sweat profusly. I have never had one while at the doc's but I was put put on plaquenil and I believe it has been helping. Haven't had that facial flush for a while now. It is important to really like and trust your rhuemy doctor. I am going to my 3rd in early Dec. because I didn't like the last two. My ANA is positive at 1:160 and my RNP's are high.
I also have fibro but I can tell the difference in pain. And I have IBS for over 20 years now. But that is the only rash I ever got so lupus was never definetly diagnosed. They think MCTD. Good luck
Hi veej. How are you doing? I wanted to ask you or anyone else about some small pimples looking things I've been getting. It is not in a specific spot, just usually shoulder area and on my butt, which is very annoying . These pimples appear one at a time. Some itch...some don't. Was just wondering. Thanks Hope you are feeling good! Linda
NJLinda, I think single, random skin boo-boos in non-photoexposed sites may be up for grabs. (Uh-oh, just remembered WHERE your most recent were located. ) Do they look anything like small hives? I know people can suddenly react to things they've ingested all their lives. I believe people with lupus are more prone to hives, and I think hives are (more or less) a hysterical (meaning wild) immune-mediated skin reaction..?
I've seen itchy bump-like things caused by over-dry skin, but I don't know what such things are properly called. My MIL used OTC cortisone cream on hers, but consulted dr. if she got too many itchy ones to bear.
My skin lesions favored the same areas of photo-exposed skin, but such predictability may not be a "rule"---so I hope others with recurrent skin eruptions chip in. Take care! Bye, Vee
I too was recently dx'd with Lupus in October and went through many 10+ docs over the years,including gastro issues a major obstructed bowel surgery in the beginning of the year. I was first going to a GP he said my blood work (CBC) "normal", so he said,I had "anxiety" gave me anti-depressants,sent me on my way...still no results-same symptoms,heart racing,shortness of breath,fainting,gastro issues etc..so then I went to a dermatologist,said I had a "strange acne",gave me acne meds,no results.,then a few more derma docs..gave up there! So I went to a neuro said I was fine...finally I was at my final straw after ten yrs. of pain & agony..did some further research online and decided to go to a teaching medical school of rheumatology (just like Veej had mentioned) thinking I had some auto-immune disease based on my symptoms...my first visit my doc knew right away I had either fybro/lupus. Sent me for blood work...and sure enough! I had lupus..I had a ANA 1:80 titer "speckled"(which is most common in lupus). My C3 was LOW ,also common in lupus.
Based on what i have read on your thread,you have very similar symptoms of what I had into discovering my lupus. (Not saying you have lupus per say..but whatever symptoms you have leads in that direction..but I am no doc by any means..
Also,I have read that lupus can go into a "remission"so if your not having a flare sometimes the tests won't show up. Maybe try getting blood work done during a flare up. I know you had a positive ANA before,but I hear some docs won't rely on just that & that can be frustrating..I also know every lab samples test differently,my doc had me go to 2 separate labs to see the results,maybe something to try as well.. I know when I got my tests done i was having a flare up. Hope this is helpful! Good luck!hang in there!
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Last edited by Angelaaljr77; 11-13-2012 at 07:17 PM.
ANGELA, did your acne-like eruptions PRECEDE starting Plaquenil? (I didn't even think to ask that in your other 2 threads, duh, sorry!) IF THEY DID, that could suggest Plaquenil isn't the cause? But if not Plaquenil, then what? I'm sure no doctor, but I'd also wonder about
1. any meds (incl. OTC's) you've taken since before the "acne" first erupted. For example, do you still take any GI meds?
2. Your GI problem itself. (If I see anything on acne-like problems coupled with GI problems, I'll post more.)
3. And there's always "run-of-the-mill" skin problems, from foodstuffs, laundry products, allergies, etc., often notoriously hard to track down... plus all manner of skin problems I know nothing about.)
BOXERMAMA, I had sweating/flushing episodes during perimenopause; laughably, those were so mixed up with my expanding lupus problems that it didn't dawn on me that I'd started perimenopause "early". Interestingly, my rheumatologist's assistant later remarked that lupus just LOVES shifting hormones. When I looked back at my life, sure enough, I'd had my first big lupus clues in early adolescence when my periods started; then more hits later at times when hormones tend to shift. This timing possibility may not apply to you, but I found it interesting...
So now waiting for results of repeat blood work to see if ANA still positive with same pattern and see if white count(slightly low) and CRP(slightly high) have returned to normal.
I have been doing much reading and realize that I must insist on a referral to the teaching hospital rheumies. I realize that even though Scleroderma is rare, I just may have some of the early signs. One of my early biggest complaints to my original pcp was morning swelling of my hands and feet - (sausage fingers and toes) she said I was eating too much salt. The current rheumy never asked about any of the symptoms or really even examined me. Maybe some one should have told me not to wear makeup to the Dr. so they could see your skin, maybe then she would have seen the tiny red dots on my face and how shiney my skin is - I thought it odd that my wrinkles were not as noticeable and my face was not droopy with a 54 lb weight loss.
I'm pretty sure it's overlap and a mixed bag at this point but definitely want to have a Dr that knows about what to look out for. Only have to wait til Wednesday for next appt. I have realized that this will be a long process and I just can't freak out every time a test result comes back abnormal or I read something upsetting - stress is no good.
BoxerMama, was your dramatic weight loss intentional? I was wondering because earlier you wrote about episodic GI problems. I think ANA & CRP can elevate in GI autoimmunes (Crohn's & Ulcerative Colitis). You could ask.
During my decades of GI nastiness, I had colonoscopies (etc.) multiple times, so I KNEW my drs. were considering the inflammatory GI AI's. If you haven't had procedures & labs to rule them out, I'd ask point-blank why not.
But the GI autoimmunes can co-exist with other autoimmunes, unfortunately. When an autoimmune GI condition is found, that doesn't rule out other AI's.
When I decided to try a new rheumatologist, I waited to feel lousy, so dr. would be seeing me at my worst. In my case, that was easy to plan, because my flareups were regular, almost like clockwork. If it's possible for you to time your first appt. with feeling your lousiest, I would.