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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.
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
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.

;)
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.
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.

Thanks for all the help and insights :)
Again, I'm just a dumb patient, but for what it's worth, your swollen fingers do not sound like the typical swelling in limited ssc, nor does the shiny skin, but you should def have the wrinkles around your mouth looked at as even they, in a certain pattern, can point in one direction or another. In sclero, the swelling is always bilateral and never goes down. Yes, VeeJ, Raynaud's can appear in a myriad of autoimmune diseases and also as a stand alone. Boxermama, was a nailfold capillaroscopy done when you were diagnosed with Raynaud's? If not, I'd want that done too, as that one simple test can help rule things in or out or point in a particular direction. Umm, as far as ANA patterns go, and because I do have limited systemic sclero, I read a lot of medical journals and abstracts, plus I have acquaintences in the sclero community who also keep up on that sort of thing. Sorry for the randomness, but I keep wanting to address things :). I had early menopuse at age 38, so I got the sweating and hot flushes without suspecting I was going through perimenopause at all, until I was all the way thru meno. And if you DO have a lot of telangiastias, by all means, let the Dr. see them. My chest is permanently red from them all and I even have them on my lips. And yes, UCTD is different than MCTD which I also gather requires anti-RNP. UCTD is more like an undeveloped cross between lupus and sclero. I also know that antibody panels very specific to the various types of systemic sclero can be run now. I have to admit that I was very lucky in that my rheumatologist is great and treated me with respect and compassion right from the start and I have never had to switch Dr's or anything. GP's on the other hand, not so much in the beginning. Any way, I was thinking of you and Angelaaljr and hope you both are doing as well as can be expected.
Back from Rheumy and repeat blood work has same ana and pattern but white count is back to normal range so she said that is a good sign. The only things out of line were low C3 and alkaline phosphate, which she said she is not concerned with.

She said facial flushing sometimes happens as does the telangesticas. So she is calling UMCTD for now. She said there may be something "cooking". We discussed placquenil but I am thinking to not take any medication unless things get worse; right now I'm tired and achey but it's bearable. I know the fatigue could be from the pain but I just have a feeling about not taking medication.

Interestingly, my SIL works for an internist and asked him to take a look at my bloodwork. He did and he said his thought would be MCTD family but that I am very anemic and that may be why I feel so exhausted. My iron counts are always out of the normal range(low) because I have thallassemia trait and most doctors don't know where it should be so they just ignore all that shows up in the out of range there. This may be another reason to check with Rheumies from teaching hospital, I thing they may pursue to see where normal for me should be - I think.

Vee - gastro issue was thought to be worse because I was not careful with food or stress. I am a crazy coffee drinker, not black anymore but I can't find any substitute so I really lighted it up. I know, still not good though. Also on that stress note, do you feel that stress makes your AI issues worse?
Do you see a therapist? Just something that my mom thought might help. My old pcp always told me I had anxiety issues and that was the shortness of breath and chest tightening, I'm really not convinced, but I am a control freak!

Thanks for any thoughts or input. :)





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