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.
The Following User Says Thank You to luca689 For This Useful Post: Boxermama (11-08-2012)
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.
The Following User Says Thank You to VeeJ For This Useful Post: Boxermama (11-09-2012)
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.
The Following User Says Thank You to VeeJ For This Useful Post: Boxermama (11-10-2012)
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!
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.
Does the swelling go away after the morning? And to the shiny skin, is there a pattern to it? Both the sausage fingers and facial tightness are usually not associated with the nucleolar pattern, FWIW. Wishing you the best.
Boxermama, could you refresh us on how detailed your AI tests have been? Just the ANA multiple times? Meaning none for specific ANA subtypes, like anti-ds-DNA, anti-RNP, anti-Ro, anti-La, etc.?
Luca, earlier you mentioned UCTD (undifferentiated connective tissue disease). I've read that sausage fingers are possible in MCTD (mixed connective tissue disease). My understanding of MCTD is that it requires a positive anti-RNP in the absence of other "subtypes" pointing to other AI's. Does that ring any bells with you? Fit your understanding of MCTD?
Last thoughts are about WHAT'S NEXT. I've seen stats (don't remember 'em) saying, the higher the ANA, the less likely it is to be false-positive. Boxermama, if latest ANA comes back same or higher, I'd want those more specific ANA subtype tests run. And maybe your rheumatologist is more engaged than he appeared: maybe he ran more tests than you realize? You'll know when you get copies of latest labs. (I'd request copies from now on.)
And if latest round doesn't yield anything more, what's his plan for the future? (My 2nd rheumatologist shared his tiered plan, rare for drs. to share, in my experience. Because he got answers on his first round of tests, he didn't have to invoke his "Plan B", but he had a Plan B, had it been needed.)
Hey thanks luca, see, that's so interesting about not associated with that pattern. How do you know where to find the most current info on what the patterning "may" mean? I guess that's why the Rheumy also said she does not put too much stock in the pattern (and that did not appear to sit well with pcp), but she totally didn't seem to even look for any signs or symptoms from what I recall just said we would deal with it if she did notice any in the future.
The sausage fingers are almost always there on right hand but just worse in the morning and are much worse on my right hand than left also tips of fingers always reddish. I also have worse pain in that hand and wrist but I am right handed if that means anything. Oddly, cracking and popping more on left wrist. I don't think it ever goes totally away but it may be because it seems that the Raynaud's seems to be much worse on the right hand also which is a real pain in the butt and I hope it doesn't get much worse because I spend alot of time just massaging that hand. I can't remember back to when I didn't have really cold hands and feet but it is so crazy that it could be so much worse just since April but then again that's probably when the air conditioning went on and that's when the first bout of excessive fatigue hit.
Facial skin issue is a weird thing and really may be from the Sjogren's or ?. My skin has been very dry for quite a few years and now I thought it was getting oily. I thought maybe this had something to do with peri-menopause. But it's not really oily, just shiny at the forehead, nose and cheecks while the chin area is dimpled and slightly wrinkled around mouth. Skin on palms of hands is also shiney and not dry as it used to be but I seem to want to put hand cream on to loosen it up a bit. Facial skin changes may also be related to the facial flusing that comes and goes, who really knows.
I'm sure it's probably not scleroderma either and just some bunch of symptoms that will come and go and make me a little crazy wondering what it is :0) Something so interesting is that ever since whatever this is that took over I oddly feel better but worse, if that makes any sense. I used to have terrible burning pains in my neck and upper back, like a razor was being scratched on my spine. I took one nortriptilyn at night and it was just bearable. Then it got worse for about 6 weeks while all my other issues went nuts, IBS, gastridis, the swallowing thing started, over-active bladder, etc. I was just a mess. Then gradually the back and neck pain almost totally disappeared but was replaced by widespread joint and muscle pain, but mostly in my legs and shoulders, hand pains have been present for years but now are also different. So I think there is something that has overshadowed the fibro somehow. I also realized that if I tried not to fight the fatigue, I am better off. I used to be able to jump up at 6 am and power through until 11 pm. Now I drag myself out of bed at 6:30 am try to function by 7:30 for a walk, get to work by 10:30 or 11, work until 5 (with quite a bit of brain fog, not really good for an accountant :0( ) Dinner is something quick to reheat and on the couch by 7:30 or 8, really not ideal but I'm trying to make it work.
Hey Vee, I will check bloodwork to see exactly what other test were run besides the ANA's there have been a bunch but I don't know where they fit in but will look them up to see if I can get a handle on it.
I recently had chest xray and echocardiagram due to the shortness of breath but the chest xray was clear and my previous echo needs to be compared to this one and it was not available to me at the time I went. This echo showed trace mitral valve regurg (I new I had that) but also showed mild tricuspid regurg (never remember hearing that before)
I will see reg rheum on Wed but I have contacted the group at the teaching hospital. I need a letter from my pcp requesting an appt but they may be able to get me in in December. I just want to make sure everything is checked and if anything can be prevented then it is prevented, not that 2 years from now I realize I should have gotten a second opinion.
Boxermama & Luca, I think Raynaud's is seen often in MCTD? (That's a question, not a statement.) *If* both sausage fingers AND Raynaud's can indeed relate to MCTD, you'd then be looking at *two* reasons for MCTD to be considered. So I hope someone can share MCTD experience (my experience is with lupus).
I think some people with MCTD have posted on the Lupus board. Going to it & using the "Search Board" feature might locate some pertinent posts---just a thought. Bye, Vee
Hey Vee, missed that post about the GI issues somehow. The weight loss was intentional. I had gained about 30 lbs when I first started having stomach issues. Somehow it would feel better after I ate, so I ate cookies, crackers all the time to get it feeling ok but it never lasted long. I was also then suffering from reflux so I then had colonoscopy and endoscopy and found that I had a fairly large patch of benign inflamed lining and a benign polyp. I had already been suffering with ibs for a little while so they were thorough and it was checked again in June of 2011 and this time patch was slightly larger, additional polyp but also moderate hiatal hernia.
I also checked my blood work and the following are all negative or in the correct range:
DNA (DS) ABS
Angiotensin Conv Enzyme
Thanks for the input! I will post results that I get on Wed, these tests were for much of the same retests plus C3, C4 CH50, liver, electrolyte and bun/creatine.