So I went to the rheumy and was there for almost two hours. He said nothing is standing out screaming lupus or any other disorder. He said that my hot flashes and cognitive problems could be early menopause, but it's not likely. He still wants my gyn to check it out though. I'm only 25 for crying out loud! He found some tender points that I didn't have before. The sucked 6 tubes of blood from me and I'm supposed to call next week for the results. I asked the lab tech if she had some juice and cookies for me, but she didn't. I had him print out my results from last year and it turns out, not only is my ANA ridiculous (1:1280), but I also have anti-centromere B antibodies which, on the paper says signals scleroderma or CREST syndrome. I don't have symptoms of either of those!
Does anyone have lupus, but also have the anti-centromere antibodies?
I left with more puzzles than I went in with! Sheesh. I just want someone to say "You have _____" and that be the end of it.
It may be time to find a new Rhuemy. One that is familiar with Lupus. There are so many indicators, but blood work is not the be all end all of determining if someone has Lupus.
I’ve only seen him twice now, but I really trust him and I like how thorough he is. He has treated my dad with lupus for many years, but my dad was also a lot sicker than me when he got his diagnosis. I feel like I’m in the baby stage of lupus and it’s making it harder to see especially since lupus mimics so many things and vice versa. I’d rather him rule out everything else to be sure it truly is lupus than jump on the lupus diagnosis. I’ll give him a few more appointments and go from there.
Ballerina, glad you updated. I agree with what Vegas had to say.
One thing, for me, that helped greatly, after being labelled with way too many different things no one could explain why I have? To start not letting my sicknesses be my focus, instead to let my health. Sleeping as needed. Eating better when able. and whatever else needs a make over. Still a work in progress, as I feel lost at the moment but that is my body influencing my mind and spirit. again.
I really like what is posted somewhere on the main page, to allow ourselves to see possibilities.
Live, laugh, love, learn, dream, and make the best of whatever you have to deal with. Yes, that is a note to myself more than you. I so understand how you feel, wanting that concrete diagnosis, and treatments that will make life livable, but some of us get no more than "I think so" or "my suspicions are" or "maybe" or "can't prove it". Life goes on. We cannot let this disease or any other be all of how we exist. Not gonna let it clip my wings!
I also agree with Vegas. You are your own best advocate! If your current Dr. does not answer your questions completely, it is time to get a different Dr. Large teaching hospitals are a great place to get answers and cutting edge care. I wish you well.
oh i so know what you mean!!!! you know yesterday i was just thinking i dont know how long i can keep doing this, (no, im not suicidal) but i am just so tired and i am so tired of hurting especially to the point where i cant even walk. i have ALMOST accepted the fact that my whole life has completely changed over the last five years. i am 44 year old and cant even clean my house or go to the grocery store without being "bed-ridden so to speak afterwards. my ana's have been ridiculous too and other test that you speak of, i just dont understand it all and never will. Also, done been there and done that on the" its early menopause" too, every year i have my blood hormone levels checked and they are right where they are suppose to be, kel
::hugs:: Hang in there! I feel your frustration, as I'd really like to get some sort of diagnosis as well. It's no fun enduring while the docs take the time they need in order to track down our symptoms, our test results, our reactions to treatments... it's definitely no fun. I'm hobbling through right now, both hoping and not hoping that my low does of prednisone works. I'd say many of us are right there with you in that boat!
At least this doc is still trying. That’s what is standing out to me. If he wasn’t still drawing blood, then I would def say to try another doc. My gut feeling is that this guy is trying, especially since he treats your father for Lupus. Good luck!
He said a lot of first degree relatives have positive ANAs, but don't necessarily have lupus and I've found that in my research too. My labs don't match up with what the lab people say and I think that's why he's drawing a big ol' question mark. I don't have his notes, but I'm going to ask him when I call for results next week. My ANA is speckled and on the little chart that the lab has in their results, says that if it's speckled, then certain antigens/antibodies were detected and it lists stuff like the anti-Sm, anti-DNA, etc. It doesn't list the centromere ones that were high in my labs. It says that a "centromere pattern" indicates that "centromere antibodies have been detected" and the centromere patterns is the only ANA pattern that lists centromere antibodies being present. So... either something's not being picked up or the lab is messed up or I'm just a freak. Not sure if that makes sense to anyone, it'd be easier if I could post the chart. Maybe these labs will show something totally different. I've always had weird lab results, ever since I was a child. He also ran a TSH to check my thyroid levels because they've never been checked before and a lot of thyroid symptoms overlap with lupus. I don't like this overlapping thing! lol
I do understand & feel 4 your frustration. I was in the hospital 27 times & the last time, 4 over2 months when they finally came up with LUPUS. I have tried so many drugs, but the side affects were worse. I know I have Lupus, but does it change things??? Knowing , I mean??
I really can't say.
I think I have had it 4 a long time, but something finally broke & it became full strength SLE Lupus. I was attacked by a Pitt bull, went through 9/11 & the list goes on, but in the end, I am trying to believe it is all 4 a reason............I pray everyday, I find what this is......
Oh------I think what u wrote is absolutely perfect!!!!! I so needed to read it. Thank u!! I was beginning to fall off my cliff.....
ohsoperplexed said:
Ballerina, glad you updated. I agree with what Vegas had to say.
One thing, for me, that helped greatly, after being labelled with way too many different things no one could explain why I have? To start not letting my sicknesses be my focus, instead to let my health. Sleeping as needed. Eating better when able. and whatever else needs a make over. Still a work in progress, as I feel lost at the moment but that is my body influencing my mind and spirit. again.
I really like what is posted somewhere on the main page, to allow ourselves to see possibilities.
Live, laugh, love, learn, dream, and make the best of whatever you have to deal with. Yes, that is a note to myself more than you. I so understand how you feel, wanting that concrete diagnosis, and treatments that will make life livable, but some of us get no more than "I think so" or "my suspicions are" or "maybe" or "can't prove it". Life goes on. We cannot let this disease or any other be all of how we exist. Not gonna let it clip my wings!
I got this info off rheumtutor.org. It is the most recent classification criteria for clinical diagnosis of Lupus. You have to at least 4 of them, but not all at the same time. At least one has to be clinical and one immunologic.
CLINICAL CRITERIA
(1) Acute Cutaneous Lupus OR Subacute Cutaneous Lupus
Acute cutaneous lupus: lupus malar rash, bullous lupus, toxic epidermal necrolysis variant of SLE, maculopapular lupus rash, photosensitive lupus rash (in the absence of dermatomyositis)
Subacute cutaneous lupus: nonindurated psoriaform and/or annular polycyclic lesions that resolve without scarring, although occasionally with postinflammatory dyspigmentation or telangiectasias)
(2) Chronic Cutaneous Lupus
Classic discoid rash localized (above the neck) or generalized (above and below the neck), hypertrophic (verrucous) lupus, lupus panniculitis (profundus), mucosal lupus, lupus erythematosus tumidus, chillblains lupus, discoid lupus/lichen planus overlap
(3) Oral Ulcers OR Nasal Ulcers
Oral: palate, buccal, tongue
Nasal ulcers
In the absence of other causes, such as vasculitis, Behcet’s disease, infection (herpesvirus), inflammatory bowel disease, reactive arthritis, and acidic foods
(4) Nonscarring alopecia
Diffuse thinning or hair fragility with visible broken hairs, in the absence of other causes such as alopecia areata, drugs, iron deficiency, and androgenic alopecia
(5) Synovitis involving 2 or more joints
Characterized by swelling or effusion
OR tenderness in 2 or more joints and at least 30 minutes of morning stiffness
(6) Serositis
Typical pleurisy for more than 1 day OR pleural effusions OR pleural rub
Typical pericardial pain (pain with recumbency improved by sitting forward) for more than 1 day OR pericardial effusion OR pericardial rub OR pericarditis by electrocardiography
In the absence of other causes, such as infection, uremia, and Dressler’s pericarditis
(7) Renal
Urine protein–to-creatinine ratio (or 24-hour urine protein) representing 500 mg protein/24 hours OR red blood cell casts
(8) Neurologic
Seizures, psychosis, mononeuritis multiplex(in the absence of other known causes such as primary vasculitis), myelitis, peripheral or cranial neuropathy (in the absence of other known causes such as primary vasculitis, infection, and diabetes mellitus), acute confusional state (in the absence of other causes, including toxic/metabolic, uremia, drugs)
(9) Hemolytic anemia
(10) Leukopenia (<4000/mm3) OR Lymphopenia (<1000/mm3)
Leucopenia at least once: In the absence of other known causes such as Felty’s syndrome, drugs, and portal hypertension.
Lymphopenia at least once: in the absence of other known causes such as corticosteroids, drugs, and infection
(11) Thrombocytopenia (<100,000/mm3)
At least once in the absence of other known causes such as drugs, portal hypertension, and thrombotic thrombocytopenic purpura
IMMUNOLOGIC CRITERIA
(1) ANA level above laboratory reference range
(2) Anti-dsDNA antibody level above laboratory reference range (or 2-fold the reference range if tested by ELISA)
(3) Anti-Sm: presence of antibody to Sm nuclear antigen
(4) Antiphospholipid antibody positivity, as determined by
Positive test for lupus anticoagulant
False-positive test result for rapid plasma reagin
Medium- or high-titer anticardiolipin antibody level (IgA, IgG, or IgM)
Positive test result for anti–2-glycoprotein I (IgA, IgG, or IgM)
(5) Low complement(C3, C4, or CH50)
(6) Direct Coombs’ test (in the absence of hemolytic anemia)
Sometimes, doctors don't about these criteria and sometimes they don't know that you have had them. In my experience, the signs have to be documented in some way. Either they have to see the clinical signs or see the blood tests or there has to be some sort of paper trail. I hope this helps someone out there.
Bravo! Start your day with what you can do, not what you can't. Some days you can't...(whatever it may be) but you can do...
You are an amazing woman, doing as much as you can do while battling a debilitating disease. Only you know how much that is. If you overdo something it's rare that people notice the extra mile, however you notice that it has negatively affected your health. The trade is NOT worth it.
You keep up the good job.
Hugs,
DeAnne
ohsoperplexed said:
Ballerina, glad you updated. I agree with what Vegas had to say.
One thing, for me, that helped greatly, after being labelled with way too many different things no one could explain why I have? To start not letting my sicknesses be my focus, instead to let my health. Sleeping as needed. Eating better when able. and whatever else needs a make over. Still a work in progress, as I feel lost at the moment but that is my body influencing my mind and spirit. again.
I really like what is posted somewhere on the main page, to allow ourselves to see possibilities.
Live, laugh, love, learn, dream, and make the best of whatever you have to deal with. Yes, that is a note to myself more than you. I so understand how you feel, wanting that concrete diagnosis, and treatments that will make life livable, but some of us get no more than "I think so" or "my suspicions are" or "maybe" or "can't prove it". Life goes on. We cannot let this disease or any other be all of how we exist. Not gonna let it clip my wings!
Many of the teaching hospitals spend much of their time in research which as we know has been sorely lacking in regards to lupus.
Thanks again,
DeAnne
Donna said:
I also agree with Vegas. You are your own best advocate! If your current Dr. does not answer your questions completely, it is time to get a different Dr. Large teaching hospitals are a great place to get answers and cutting edge care. I wish you well. :-)
