It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Lupus Message Board

  • Lupus Centromere pattern

  • Post New Thread   Closed Thread
    Thread Tools Search this Thread
    Old 12-11-2014, 04:33 PM   #46
    VeeJ
    Senior Veteran
    (female)
     
    Join Date: Feb 2004
    Posts: 5,711
    VeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB User
    Re: Lupus Centromere pattern

    Hi, Stacey. Here's what I *think* I know, but you need a real doctor, obviously. But once again, I think you're asking the right questions!

    Proper diagnosis and unique treatments needed? Yes, for both lupus & Sjogren's. Goal is to suppress production of unwanted, damaging autoantibodies. These useful meds aren't prescribed without a proper dx.

    For milder lupus (meaning no major organ involvement, like heart, lungs, kidneys, brain, etc.) and for Sjogren's, a very old and cheap drug called Plaquenil (hydroxychloroquine) has been used since WWII. Many patients also require NSAID's (anti-inflammatories) to help to control pain.

    If major organs are affected by lupus, stronger meds than Plaquenil are absolutely necessary: steroids and/or immunosuppressants.

    Painkillers merely mask pain; they don't disrupt autoantibody production.

    For dry eyes in Sjogren's, artificial tears are used. For dry mouth in Sjogren's, drugs that promote salivary activity; in the US, examples are Pilocarpine and cevimeline.

    Mouth ulcers. These are certainly seen in lupus and are one of the 11 diagnostic criteria. (See the "sticky post" for all 11. You generally must meet 4 or more, but not always, to be dx'ed with SLE. As I said earlier, anti-Ro patients sometimes meet fewer than 4.)

    LBT (lupus band test). I believe this skin biopsy may be done on anyone in whom lupus is strongly suspected, whether that person has had rashes or not. Obviously, if blood labs, urinalysis and the aggregation of diagnostic criteria have already proven lupus, there's no need for an LBT, meaning it's needed only in equivocal situations. The LBT looks for deposition of anywhere from 1 to 5 immunoglobulins deposited between the dermal & epidermal layers of skin (that's why deep-punch is needed, not surface). Why? Because deposition of these immunoglobulins is virtually unique to systemic lupus.

    How LBT is done. In the first step, dermatologist or pathologist looks with a microscope for tell-tale cellular changes. In the second step, he applies various stains which react with the 5 immunoglobulins, because they will fluoresce in linear bands in people with systemic lupus (hence the name "lupus band test"). The greater the number of immunoglobulins that fluoresce, the higher the probability that it's systemic lupus. (My tests were "grossly positive" for all 5.)

    Corneal pitting. YES, this is important, not just for a possible diagnosis but for your vision. It's characteristic of Sjogren's, and it's detected by rose bengal or lissamine green staining. The most definitive test for Sjogren's is actually lip biopsy, but one of my hardcovers says it's rarely needed---instead the doctor looks for enlarged salivary glands.

    Whether you have lupus or Sjogren's or both, I couldn't know, but honestly? Both seem possible to this (dumb) patient (me). You could visit your local library to borrow books on lupus---the best ones also cover Sjogren's and other "close cousins", but I think you've already lined up a great list of questions.

    So keep us posted, OK? We're rooting for you & will be watching for updates. Sending more hugs, Vee

    P.S. I almost DIED ON THE SPOT when I met that woman with my same rash, SCLE annular. I've concluded that doctors look for the most common lupus signs, e.g., anti-ds-DNA, anti-Sm, malar (butterfly) rash or discoid lesions, and kidney malfunction---but they aren't conversant enough with OTHER presentations. That's a HUGE problem for people in the "subsets", like me.

     
    The Following User Says Thank You to VeeJ For This Useful Post:
    alicake (12-12-2014)
    Sponsors Lightbulb
       
    Old 12-12-2014, 02:44 PM   #47
    StarStacey
    Member
    (female)
     
    Join Date: Oct 2014
    Posts: 67
    StarStacey HB User
    Re: Lupus Centromere pattern

    Right, so I have these autoantibodies, and they won't go away, right? If I don't get medicinal treatment, things will get worse? But to get Plaquenil, I need to a rheumatologist to say I have Lupus/Sjrogen's or Limited Systemic Sclerosis?

    Thank you both your your replies.

    I'm not saying that I'm not comfortable with my rheumatologist (I only met him once), (He spent 1 hour with me, crying, trying to reassure me that he would "monitor" me and that he was checking my heart and lungs and sending me for MRI of the brain to prove I don't have MS) BUT I am still not sure what he thinks is "treatment". Is having ENA Anti Ro not significant enough to treat/stop the further production of it? I don't know if I should be getting treatment (I'm not a doctor either), but I would have thought that if someone has autoantibodies, then if these are destructive in a person's body, then you'd want to stop further production of them.

    Thank you for your support. Sharing your experiences really gives me an understanding of what to expect and hope that one day I will get help. I'm 39 now. I hope it's not too much longer as I feel that my childhood hip disorder has masked a problem that has been there for a long time.

    Yours,
    Stacey

     
    Old 12-12-2014, 03:32 PM   #48
    StarStacey
    Member
    (female)
     
    Join Date: Oct 2014
    Posts: 67
    StarStacey HB User
    Re: Lupus Centromere pattern

    Right, so I have these autoantibodies, and they won't go away, right? If I don't get medicinal treatment, things will get worse? But to get Plaquenil, I need to a rheumatologist to say I have Lupus/Sjrogen's or Limited Systemic Sclerosis?

    Thank you both your your replies.

    I'm not saying that I'm not comfortable with my rheumatologist (I only met him once), (He spent 1 hour with me, crying, trying to reassure me that he would "monitor" me and that he was checking my heart and lungs and sending me for MRI of the brain to prove I don't have MS) BUT I am still not sure what he thinks is "treatment". Is having ENA Anti Ro not significant enough to treat/stop the further production of it? I don't know if I should be getting treatment (I'm not a doctor either), but I would have thought that if someone has autoantibodies, then if these are destructive in a person's body, then you'd want to stop further production of them.

    Thank you for your support. Sharing your experiences really gives me an understanding of what to expect and hope that one day I will get help. I'm 39 now. I hope it's not too much longer as I feel that my childhood hip disorder has masked a problem that has been there for a long time.

    Yours,
    Stacey

     
    Old 12-13-2014, 01:51 AM   #49
    VeeJ
    Senior Veteran
    (female)
     
    Join Date: Feb 2004
    Posts: 5,711
    VeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB User
    Re: Lupus Centromere pattern

    Stacey, I'm not positive that not taking meds always "guarantees" you'd get worse: I think that can vary hugely by patient. But knowing the damage these conditions CAN cause in SOME patients is sufficient reason to press for clarity (not to mention the human toll of not feeling well so much of the time).

    Anti-Ro attacks cell cytoplasm. Did he say how high your anti-Ro was?

    Back to scleroderma... Did your rheum ever say WHY it's on his radar? For the record, there are several scleroderma-related conditions: scleroderma, CREST syndrome, and Mixed Connective Tissue Disease (MCTD). Maybe he's looking somewhere on this broad spectrum, is what I'm wondering.

    I think Sjogren's has its own set of criteria. My favorite hardcover says there's recent evidence that Plaquenil helps quell the underlying immune process, but I'm not sure how often Plaquenil is actually prescribed for Sjogren's, so that might be something you could ask him.

    There's also a "not otherwise classified" condition called Undifferentiated Connective Tissue Disease (UCTD), with its own diagnostic criteria.

    You could find more precise definitions of these "close cousins" in library books. But since he's having both your heart & lungs checked, maybe he's leaving the door open for those results to be considered? Checking your major organs does make sense, plus the results may help him to arrive at a more "refined" dx... but I do understand your wanting a name for this right now, not later! We'll watch for your updates & keep hoping that you get more clarity soon. All my best, Vee

     
    Old 12-13-2014, 02:18 AM   #50
    VeeJ
    Senior Veteran
    (female)
     
    Join Date: Feb 2004
    Posts: 5,711
    VeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB User
    Re: Lupus Centromere pattern

    P.S. Stacey, beyond replenishing eye and mouth moisture, the other current treatments for Sjogren's do include Plaquenil (esp. useful for joint pain and rashes); for more serious problems, stronger meds like steroids and immune suppressants are employed.

    I just reread the entire thread. Back in your first post you list oral ulcerations on the roof of your mouth and a rash across your nose. Did the rheum see both? (Those both sound so lupus-like to me.)

    Re: AB's seen in lupus, one of my hardcovers actually lists 15! Only the two with the highest prognostic value are named by name in the criteria: anti-ds-DNA and anti-Sm. Yet that does not mean that others, like anti-Ro, don't occur. Those others are simply fuzzier, less specific, because they can occur in multiple conditions. (This is hard to phrase clearly, so yell if it doesn't make sense.) Sending hugs, V.

     
    Old 12-13-2014, 03:56 AM   #51
    StarStacey
    Member
    (female)
     
    Join Date: Oct 2014
    Posts: 67
    StarStacey HB User
    Re: Lupus Centromere pattern

    Thank you VeeJ,

    The rheumatologist only mentioned CREST because when he told me that the ANA was centromeric in pattern I mentioned that I have read it is linked with CREST/Limited Systemic Scleroderma. Then he started to go through some of the things that you would see in scleroderma and said I do not have any of the physical symptoms of this, which I totally agreed. He briefly mentioned mixed connective tissue disease and brushed over it quickly also saying that I don't have any physical symptoms for it either. I am not sure if that is the only thing he was considering or if because I put the words in his mouth, he felt compelled to quash these thoughts. I don't know the number for my Anti Ro. I didn't realise there would be a number, but I WILL find out before Christmas break if I have to go to the hospital and camp outside his office and wait for him to tell me! I'll let you know when I get it.

    Regarding the mouth ulcerations and rash, he annoyed me when he said that he didn't want to talk about my history as the last time I was there, his registrar had already heard all of it. In that discussion I did mention the roof ulcerations (that appear and take several weeks to heal and appear for no reason), but I don't have them all of the time. I also mentioned my pink nose, cheeks and forehead. I showed her a photograph. I am not sure if I asked here on this thread (I don't want to lose everything I've typed already) but I did mentioned that my rash appears prominent after washing my face for a half hour or so and some days it's longer. My nose appears blotchy pink and spreads to both sides but doesn't go all the way across to my temples (if you know what I mean). I'll try to message you a picture of it (and you can tell me what you think).

    Do I need immunosuppression therapy? Not only do I want to understand what's wrong with me, I want others to understand. I feel that nobody believes me. I'm sure that makes sense to a lot of you out there.

    Thank you again,
    Stacey

     
    Old 12-13-2014, 06:31 AM   #52
    VeeJ
    Senior Veteran
    (female)
     
    Join Date: Feb 2004
    Posts: 5,711
    VeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB User
    Re: Lupus Centromere pattern

    Hi. Now I get why rheum spoke about scleroderma: only b/c you'd asked due to your centromere pattern.

    MCTD always features anti-RNP (it's a required criterion).

    Anti-Ro level. My labs show a reference range for anti-Ro, so it looks like it can be quantified.

    Like you did, I'd have mentioned mouth ulcerations and your facial redness, and I'd have been highly annoyed at the rheum's reminder that you'd already told the registrar. Gee, that's what these conditions are all about: looking for both past and present symptoms, not merely focusing on what the rheum is able to see today!

    Plaquenil is said to "modify" the immune system as opposed to "suppressing" it; I think it alters the pH (acid/base) balance in cells, which somehow discourages the production of AB's. In contrast, steroids and immune suppressants flat-out "suppress" the immune system. It's a huge mistake to prescribe ANY of these meds without being sure, but it's also a mistake to fail to diagnose---and therein lies the rub, as that famous writer once wrote.

     
    Old 12-13-2014, 07:14 AM   #53
    VeeJ
    Senior Veteran
    (female)
     
    Join Date: Feb 2004
    Posts: 5,711
    VeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB User
    Re: Lupus Centromere pattern

    Stacey, if you're curious, you could also look into the 6 established classification criteria for Sjogren's. Like the ones for lupus, they're quite specific. They also cite specific tests that you may or may not have had done. (And if this all looks like bean-counting? I guess it is, in a way.)

     
    Old 12-20-2014, 07:16 AM   #54
    StarStacey
    Member
    (female)
     
    Join Date: Oct 2014
    Posts: 67
    StarStacey HB User
    Re: Lupus Centromere pattern

    Received the rheumatology report in the post and realise that he was quietly working away in his head, meanwhile I cried the whole time thinking he didn't understand me.

    Primary Diagnosis:
    Uncertain diagnosis, (?connective tissues disease ?mechanical pain)
    Undifferentiated CTD (ANA-centromere antibodies positive, anti Ro ve.)

    He also has written:

    Neurological issues: She reported feeling fuzzy, dizzy, having poor concentration, frequent twitching of muscles in arms, fingers and legs, feeling that arms and hands are shaking, numb hands and feelt especially when lying down, intermittent stutter and stammer,.

    Few of her symptoms can be explained secondary to Amitriptyline but she was concerned that she might have MS, but Neuropsychiatric Lupus is high on the differential diagnosis list.

    Those were the highlights. What do you think?

    Last edited by StarStacey; 12-21-2014 at 03:36 PM.

     
    Old 12-21-2014, 12:32 PM   #55
    VeeJ
    Senior Veteran
    (female)
     
    Join Date: Feb 2004
    Posts: 5,711
    VeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB User
    Re: Lupus Centromere pattern

    I see this as progress, perhaps not as specific as you'd wanted, but definitely progress! For the record, UCTD (undifferentiated connective tissue disease) is a totally valid dx. It's made when you DO fit a certain # of UCTD criteria but DON'T fulfill the criteria for some more specific CTD (such lupus, Sjogren's, MCTD, RA, etc.) From that point forward, the patient is carefully monitored to see whether she DOES ultimately fulfill the criteria for one or more of the others---or whether the problems totally resolve. (Oddly, in a certain percent of UCTD patients, everything goes away leaving them with no CTD dx.)

    I'd want to know (1) Is he offering treatment? (2) How often will checkups be done? Whew, long haul, but getting firmly established as CTD is important. So let us know what happens next, OK? Sending my best, V.

     
    The Following User Says Thank You to VeeJ For This Useful Post:
    StarStacey (12-21-2014)
    Old 12-21-2014, 03:40 PM   #56
    StarStacey
    Member
    (female)
     
    Join Date: Oct 2014
    Posts: 67
    StarStacey HB User
    Re: Lupus Centromere pattern

    Thanks :-) I am in the process of pulling together some questions and drafting a letter to send. He is, unsurprisingly, on vacation right now, so won't hear anything til after the new year. Still, like you, I saw the report as progress. I think the MRI, PFT and ECG will certainly influence if treatment to begin. My symptoms certainly aren't showing any signs of disappearing, so watch this space.

    Thanks to all who have contributed to this. It means a lot! Happy holidays :-)

     
    Old 12-22-2014, 05:51 AM   #57
    StarStacey
    Member
    (female)
     
    Join Date: Oct 2014
    Posts: 67
    StarStacey HB User
    Re: Lupus Centromere pattern

    Thanks :-) I am in the process of pulling together some questions and drafting a letter to send. He is, unsurprisingly, on vacation right now, so won't hear anything til after the new year. Still, like you, I saw the report as progress. I think the MRI, PFT and ECG will certainly influence if treatment to begin. My symptoms certainly aren't showing any signs of disappearing, so watch this space.

    Thanks to all who have contributed to this. It means a lot! Happy holidays :-)

     
    Old 01-11-2015, 04:28 PM   #58
    HeIsBigger
    Newbie
    (female)
     
    HeIsBigger's Avatar
     
    Join Date: Jan 2015
    Posts: 9
    HeIsBigger HB User
    Re: Lupus Centromere pattern

    Stacey, I am so glad you have shared what has been going on with you and that you have received such knowledgeable support here. I am so grateful to have found your thread today, and can't tell you how closely I can identify with all that you have been through recently. I know that one of the most difficult aspects of my current, similar experience is that I feel alone, as I don't know anyone who has been through this tail-chasing experience. Life has been one big question mark lately, and that's not something I've ever lived with before.

    I'm 41 years old and have been off of work for a few months due to a significant case of adrenal exhaustion. We'd been treating that and all that it entails for a good couple of months before I finally saw a dermatologist for my hair loss issue, which really started about 3 years ago. Because I also had major thyroid issues, (as is often the case with adrenal fatigue) we've thought it was related to my being severely hypothyroid and resistant to any meds I took for it. When we eventually started to see an improvement in my thyroid levels and the hair loss was worsening, I realized that I'd better find out what was really causing my hair to fall out, afraid of what the mystery cause might be doing to the rest of my body. Long story short, the dermatologist ran quite a few tests and whaddayaknow! My ANA was positive, as was my anti-centromere B. I've had positive ANAs in the past - about 12 years ago, which were found after I miscarried repeatedly. (total of 5) I finally gave up on having another child and went on with life, never having reason to think there were any autoimmune issues brewing.

    Many of my symptoms over the last year have confused my doctors, and you actually named a few of them. MS was ruled out early on, which made the neuro issues even more puzzling. My adrenal issues were so extreme, though, that these confusing symptoms could have been attributed to them, and so they were. As my adrenals are improving, though, several of these "weirdnesses" remain. My memory ranges from poor to non-existent, I talk in circles, have numbness, tremors and weakness in my hands, arms and legs. I don't have much control as far as fine motor movement goes in my hands, which is very difficult to deal with. I stutter and stammer all of the time and people look at me like I am crazy. It really confuses my family. I don't remember what you said about your energy level, but the feeling of profound fatigue I have is impossible to describe. It's the symptom that I hate the most, even more than the baldness, because it's keeping me from living life.

    Just before having the bloodwork drawn, I had undergone both an EGD and a swallow study because I had been complaining of trouble swallowing. I didn't find out until later that my GI doc had, in fact, performed an esophageal dilatation and once I started reading about CREST, thinking about this scared the heck out of me.

    After going out of town because of the amount of time it would take to get into a rheumatologist locally, I was looked over from head to toe by a couple of doctors. A highly esteemed rheumatologist told me that I "do not have Scleroderma", as that was my biggest fear. I have an aunt who has it and that hasn't helped my anxiety level since seeing those lab results. He recommended that I see the local doc and suggested that I begin considering Plaquenil before seeing him. He was also quite pleased that I was already on Prednisone for my adrenal issues and told me to continue with it. I felt very reassured by what he'd told me. He drew a little pic and told me that what might be going on is Lupus combined with some overlap, which he felt might be APS, since I had antiphospholipid antibodies with each miscarriage. However, he was stumped as he examined me. He repeatedly acted like he wasn't seeing things that he'd expected to see. I hoped that this was a great thing. I came home relieved, but the question marks remained and I hoped that they would be fewer (or at least smaller!) after my appt with the local doc.

    No such luck. He listened to my history and told me how stumped he was by my labwork combined with my symptoms. He spoke as if I have Lupus and said that he is confused and more concerned with getting to the bottom of "the overlap diseases you've got goin on here". I felt pretty good until he made one little statement. When I told him that I'd been having trouble swallowing and that my esophagus was dilated during the EGD, he said that I'd probably have to have that done again. I don't know of any diagnosis other than the Sclerodermas that involve esophageal issues, but I hope I'm wrong about that. Needless to say, my brain jumped back to the possibility of Limited Scleroderma/CREST. He also said that regardless of what is going on specifically, Plaquenil could help slow the onset of new symptoms and help with any current manifestations of the mystery disease(s). I started that on December 18th, and I left there with an appt to see him in March - three months later, just as your doctor had done with you. I about died when I realized it would be another three months of waiting!

    I had to get on top of the stress that all of this was causing, because every single symptom I had been experiencing was getting worse when I was in a constant adrenaline-fueled state. It was a fight-or-flight kinda thing, and I was fighting hard to FIX IT. Being locked in fix-it mode while not knowing the nature of the problem is not conducive to sanity. I knew I had to accept that this is going to be a waiting game and that nothing I could say or do would change that. I also knew that I had to get my fears under control for the sake of my health "right now", or I would actively make myself worse. I'm still struggling with it, but it's getting easier. Stress is the devil!

    When I sat down to type this, I didn't plan to babble on like I have, but wanted you to know that you're not alone and that in addition to all of the wonderful support you've gotten here, yet another person knows how you feel and is pulling for you! Hang in there and try to enjoy every second of every day!

    Last edited by Administrator; 01-15-2015 at 11:12 PM.

     
    Old 01-12-2015, 01:36 AM   #59
    StarStacey
    Member
    (female)
     
    Join Date: Oct 2014
    Posts: 67
    StarStacey HB User
    Re: Lupus Centromere pattern

    Hi, HeIsBigger,

    Thank you so much for getting in touch and sharing your story with me. I am very sorry for your miscarriages. This is one thing that I haven't had, though I never fell pregnant easily. I suppose I could have "miscarried" very early on as my periods were never regular, but I never suffered a known loss like you. <3

    I haven't been tested for antiphospholipid antibodies yet, but it is something that I have queried in a letter to my rheumatologist who is still on annual leave from the holiday period. I have read that APS have the following symptoms:
    • balance and mobility problems
    • vision problems, such as double vision
    • speech and memory problems
    • a tingling sensation or pins and needles in the arms or legs
    • fatigue (extreme tiredness)
    • repeated headaches or migraines

    I can confirm that I have balance and mobility problems, speech and memory problems, tingling sensation in arms and legs, fatigue and headaches. The only thing that is a constant is the fatigue, but I suppose APS could explain some of my neurological symptoms. I still have terrible twitching, though it is particularly noticeable in my arms and legs.

    I have never had an EGD, but sometimes I feel that the reason I can't get the words out is due to my throat, if that makes any sense at all. And a lot of the time it's I can't think of the words. Perhaps you might relate? I wouldn't say that I have swallowing difficulty yet, but who knows, maybe on the cards.

    Although I have had significant increased hair loss, I still look as though I have plenty of hair. Only once in my life can I say I had clumps (which I only just recently remembered - memory loss, eh! - after talking to my hair dresser).

    Although I have centromere pattern ANA, I don't meet the criteria to be diagnosed with that either. However, I strongly feel that I have Lupus in some form and probably overlaps of some other autoimmune disorders like Sjogren's Disease. What is your own gut instinct telling you?

    My rheumatologist is considering neuropsychiatric lupus high on the differential diagnosis. I suppose he is unable to draw any further conclusion until we have had MRI brain scan to rule out MS. Still, though, I'm not sure any diagnosis will be without some level of doubt, or have scope to grow into a more detailed diagnosis. I think with most of these autoimmune disorders there are lots of overlaps that develop.

    Have you had the ENA panel test done? I tested positive for Anti-SSA-Ro. I am rheumatoid factor negative.

    I am in the UK; however, hail from Pennsylvania. Where abouts are you located?

    Thanks again for sharing your story. It's good to know that we are not alone in our worries! My next rheum appt is 13th March, by which time I hope to have had my MRI scan and the series of other test results back.

    Take care,
    Stacey

    Last edited by Administrator; 01-15-2015 at 11:13 PM.

     
    Old 01-12-2015, 08:34 AM   #60
    HeIsBigger
    Newbie
    (female)
     
    HeIsBigger's Avatar
     
    Join Date: Jan 2015
    Posts: 9
    HeIsBigger HB User
    Re: Lupus Centromere pattern

    Holy cow, Stacey, I can absolutely relate to not being able to "think of the words"! It is so frustrating, and to be honest, scary. Some days my memory and my ability to think, reason, and concentrate are so poor, I feel like I am dangerous. This is actually my biggest concern right now -I need to be all there and my biggest fear regarding my return to work is that I won't be able to perform my job safely.

    The balance and stability issues are something that I've gotten quite used to, to the point that I often don't notice them anymore unless there's some type of crash involved. (I run into walls all the time - my right shoulder is almost always bruised!) Lots of this stuff is so crazy, it's a lifesaver to be able to laugh about it. A sense of humor is definitely vital to sanity here...

    I have had the ENA panel done and I think every other antibody test/screen run now, and everything was negative except the ANA (>1:1280, like yours) and the ACA. As far as my ANA goes, one lab's results state that it shows both "homogenous and speckled patterns". I know that my complement levels are low (C3 and C4), and my ESR and CRP were both ok. I had already been on steroids for two months at the time of the draw, though - so I wonder what kind of inflammation would have shown pre-steroids.

    Another symptom I've had that has driven me absolutely nuts were major floaters and white spots affecting my vision. I recently realized that they've been much better lately - I think since I've been on Plaquenil. This is a great relief, because they were another issue that I worried about in regard to returning to work.

    When writing about all of this, I hate that it sounds like I'm complaining because that's not the case. (I am sure that you and many others here can relate to this!) The truth of the matter is that we are having to play detectives in a very complicated investigation and we have to gather, examine, research and compile as many facts as possible in order to have a shot at coming up with anything fruitful that might help solve the case. We are on a mission because we have to be. However, I think we also have to remind ourselves that we DO have today and we are fortunate enough to have the ability to do what we ARE doing. I catch myself taking for granted just how able-bodied I still am, and don't want to let the blessings that are all around slip by me because I'm so focused on finding out what may or may not be wrong with me. Easier said than done, but I'm forcing myself to put forth as much effort into keeping myself in check with this as I am into coming up with answers. If only I could remember to do it!

    You asked what my gut is telling me, and the odd thing is that this is probably the first time I've ever had my gut give me the silent treatment! I honestly do not know what is going on inside this body. I don't even have a best guess. It's so weird and a foreign feeling to me, because I usually like to have everything figured out as soon as possible and that's what my control freak brain automatically does in all situations. How about you, is your gut telling you anything about your situation?

    Speaking of guts, I have a couple of questions for you - have you had many GI issues in the past? What is your diet like? (I will expand on this soon, I have to run for now - and please feel free not to answer my questions if they feel too intrusive)

    I hope you'll keep us updated, I know you said you see the doc again on March 13th. Please let us know how it goes, if you can. I'll be seeing mine 5 days after you, so both of us will hopefully be at least a little more informed in a couple of months!

    I hope that regardless of what might be going on in your body today, there is a smile on your face! Hang in there! (or hang ON if it's an especially wobbly, clumsy day!)

    Last edited by HeIsBigger; 01-15-2015 at 11:54 PM.

     
    Closed Thread




    Thread Tools Search this Thread
    Search this Thread:

    Advanced Search

    Posting Rules
    You may not post new threads
    You may not post replies
    You may not post attachments
    You may not edit your posts

    BB code is On
    Smilies are On
    [IMG] code is Off
    HTML code is Off
    Trackbacks are Off
    Pingbacks are Off
    Refbacks are Off




    Sign Up Today!

    Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

    I want my free account

    All times are GMT -7. The time now is 04:14 PM.





    © 2021 MH Sub I, LLC dba Internet Brands. All rights reserved.
    Do not copy or redistribute in any form!