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.
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.
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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!
Boxermama, even if you don't want Plaquenil now, I hope you'll do yourself a small favor: look into it, write down its many benefits, get your arms around the eye concern (which is extremely low-odds, btw), and keep your notes in a file you could consult. I found the most comprehensive (and reassuring) info on Plaquenil in a lupus hardcover. (The lupus board has a "sticky post" on reading resources.) Plaquenil is considered a safe drug, and it's steroid-sparing. I consider myself very fortunate not to have needed stronger meds (steroids and immune suppressants).
About your colonscopy findings, those patches of inflammation worry me because inflammation can cause permanent damage to organ tissue. This is why the more serious GI AI's, like ulcerative colitis & Crohn's, are called INFLAMMATORY bowel disease: the word "inflammatory" distinguishes them from more "benign" GI conditions. I hope you double-check your findings.
My GI tests didn't find inflammation, but even without inflammation, I was miserable for 20+ yrs. Just a few days ago in an article, I saw two forms of colitis described that are common in AI's: Collagenous colitis and Lymphocytic colitis. Nearly fell off my chair! This AI-GI connection may explain why Plaquenil quelled my longstanding GI problem (among other things). i.e., if your problem is AI-driven, if you quell AI activity, you may quell the problem.
STRESS. No, I never bought the theory my doctors peddled. Yes, I was stressed, but I see that as the effect of my health issues, not the cause. Years into my problems, I tried a therapist. Laughably, I paid a whole lot of money for a year, becoming enraged when she went all Freudian on me, and finally one day bellowed, "My #1 problem is DOCTORS!" I'd never articulated that, so it was rather funny, I suppose...? I resumed working on my problems, and 3.5 years later got the help I needed (dx of lupus, treated by Plaquenil, OTC's, vitamin supplements, and sun avoidance).
Yes, I had anxiety attacks and sudden breathing problems (tightness & gasping). These appalled me because I'd been the little kid who rode the roller coaster five times running, etc. Interestingly, anxiety attacks are listed in the "alternative criteria" for lupus (those are in a sticky post on the lupus board.) I also read that lupus can disrupt the autonomic nervous system, causing breathing irregularities, racing heart, etc. My anxiety episodes stopped cold; and I find this meaningful b/c these years were very tough emotionally (lost my parents and two of my closest friends, and my husband had his first serious health hits).
Yep, Luca's immediate focus on UCTD/MCTD was/is pretty shrewd indeed!
I'd love you to do these favors for yourself: read up but include Plaquenil, and double-check your colonscopy findings. I'd REALLY HATE IT if your problems worsened for not weighing carefully the opportunity your doctor just offered. Let us know how you're doing & what you're finding in your studies. We want you to feel your best. Sending hugs, Vee
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I agree with VeeJ that you should read up and include Plaquenil in that. When I was first diagnosed, I was put on it and it, for me, really helped with the fatigue. It took a while but I am so glad I was prescribed it. It was a few years later that the more toxic drugs were added for me. I never really bought into the "stress" thing either, but then I never got any anxiety attacks, (even when my PCP told me that it was all in my head and that I was anxious - what a jerk!) but they are not associated with sclero, either. Def follow up on those inflammatory patches and get those under control. I had an upper GI immediately on diagnosis because of GERD (which IS part of sclero) and went on preventative medication against further damage. That, too, was a game changer for me. I felt a whole lot better! I had to weigh the side effects (possible osteoporosis) versus the benefits (saving my eosophagus) and carefully consider my Dr's advice. Oh, I did want to point out that you should be carefull when reading up and doing research because often times all you find are worst case scenarios, or mis-information, and down right scams designed to play on your fears. Keep us posted and as always, wishing you the best.
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Boxermama, in post #23, you mentioned alkaline phosphate. Was it high or low, and what might each suggest? You should add to your To Do list.
I know, your list keeps expanding. But that really is the best way to get your arms around this & to sense whether you're getting appropriate medical input. (I didn't ask the right things, I didn't know any better, plus my worst years were mostly pre-internet. You have better avenues now, luckily.)
I've read that the C3 and C4 serum complements can depress in lupus, I'm not sure about MCTD/UCTD, but it kind of feels possible b/c those are "crossover close cousins"? Maybe someone else has insight?
I'm glad you found us. Please keep at it & touch base when you can. Bye, Vee
I can only speak to the sclero side of UCTD, but my understanding is that complement does not drop in sclero, usually but not always. In fact, mine is usually high. I believe that complement levels in lupus are lower than in MCTD. I also think that lupus specific and sclero specific antibodies are absent in MCTD. I don't know about the ANA patterns, but the specific antibodies, like anti-DSDNA and anticentromere and the like. UCTD also can have low complement levels.