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Medical Forum / Diseases and Disorders / Lupus / June 2004was just wondering....am i really a lupie?
hi all, i need comments. i have been dx with lupus sometime early this year with symptons like swollen fingers, knees, basically joints that looks like rheumatoid arthritis to most docs. but my RA factor is negative though....then more bloodworks to include a positive ANF, high Anti ds-dna, low complements, C3 and C4. Based on those test i was dx. do you think there is a possibility of a wrong diagnose? don't get me wrong, i am not saying i don't trust my doctor but other than joint pains i feel quite ok, no occassional fever, not anemic.... thanks for reading.... bin bin, from those tests alone, it is possible for a diagnosis of lupus. If you are having fatigue, joint pain you can still have lupus and RA with it. one thing to remember, a test is a test. RA neg does not mean it might not be RA. YOU can have a negative RA factor and still be diagnosed with RA. the tests like C3 C 4 being low and indicators of lupus. Plus a positive anti DNA is another choice of lupus diagnosis. Are you haveing problems getting right treatment? or is it you are scared of the disease and treatment. Most treatment will include more blood tests and such. what type meds are you on? DO you have rashes, mouth sores? those types. www.lupus.org is a good site to look for sign for lupus diagnosis but again, sometimes auto immune diseases over lap and you can have more than one. hang in there and let us know. Need info write me janers Hi Janers, Thanks for your kind reply. To be honest, I am a little afraid as I have read so much about what lupus is 'capable of causing...'. I do not have mouth sores, no rashes (except for urticaria) but my joints do hurt. I have been put on 30mg pred., a month later down to 15mg, another month later 10mg, and then 5mg, then joints hurt/swell again, now back to 15mg, volteran, with some other pills. I am seeing a rheumatologist now and it cost a bomb. Rheumy said the earlier doc reduced my pred. too fast. I am worried, I know what pred can do to me. First week, I'll have loads of energy then second week I will feel bad, headache, bloating....name it...it is bad. Thanks all. I posted an intro a few weeks back, before I went to the rheumatologist, but it never showed up on the group. I thought, for sure, my ANA and sed rates would be up when I saw the rheumatologist, but they came back normal. The only thing the tests showed was that I have osteoarthritis in my hands and feet. I still wonder if I don't have lupus, though. Is it possible to have lupus, even if the ANA and sed rates come back normal? (Sed rates and ANA were up when the endocrinologist said I needed a referral to a rheumatologist. One of them was up to 28 (I think it was the sed rate, but I can't recall, for sure.) What do you do for your mouth sores? Over the past week, I've developed two sore places at the top of my gums--one on each side of my mouth. As an intro . . . I'll be 50 next month, and I've felt "rough" for years, especially since I had a baby 2 months' shy of my 37th birthday. That's when I first noticed my face started flushing and turning red. That's also when I began having swollen ankles, which the GP said was due to borderline high blood pressure. He put me on HCTZ at that time, and that has kept it down. I complained that I still felt crummy on the next check-up, and he found I was hypothyroid, so GP put me on Synthroid. Got my level in check after about four or six months, but I still felt crummy. After a year of being in the "normal TSH range," I decided the doc must be going by the old scale for thyroid treatment, as the guidelines have been changed in the last couple of years. I went to see an endocrinologist. Endocrinologist did blood work and found my ANA and SED rates were not right. The SED rate was up to 28. (Can't remember what the ANA was.) I was told to get back with the GP and get a referral to a rheumatologist, who gave me a prescription for Celebrex (2 capsules per day) and had a bunch of labs, urinalysis, and x-rays done. After the tests came back, the rheumatologist's nurse said my sed and ANA levels were normal. I have swollen glands under my ears (swollen for about 3 to 4 months). My muscles often ache like I have the flu. I've not had much energy over the past many years, but over the past year, I've had several days where I've been absolutely exhausted--to the point that I am unable to do much more than get up and go to the bathroom. The nurse told me I do have osteoarthritis in the hands and feet. Can arthritis, alone, cause me to feel this way and have the swollen glands? My medical history includes IBS, diverticulosis, and allergy and asthma, all of which I've had for at least 30 years. I apologize for rambling. I'm just feeling overwhelmed, and I don't see the doc again till June 30th (earliest appt.). Any feedback you can give me will be very much appreciated. Karen C./KY > wonder if I don't have lupus, though. Is it possible to have lupus, even if > the ANA and sed rates come back normal? yes. >(Sed rates and ANA were up when the > endocrinologist said I needed a referral to a rheumatologist. One of them was > up to 28 (I think it was the sed rate, but I can't recall, for sure.) An ESR (sed rate) of 28 is not that high - just barely above normal and could be caused by any number of things including stress, recent exposure to someone who has a virus (but not subsequent illness on your part), virus, injury, etc. Anything that might stimulate the immune system can increase the ESR. It would be good to find out what your actual ANA titre was. If it was 1:160 or below, it's not really too helpful for figuring out what is wrong. 1:40 is considered normal by most standards and 1:80 is usually considered a low false positive. > After the tests came back, the rheumatologist's nurse said my sed and ANA > levels were normal. I have swollen glands under my ears (swollen for about 3 > to 4 months). My muscles often ache like I have the flu. I've not had much > energy over the past many years, but over the past year, I've had several days > where I've been absolutely exhausted--to the point that I am unable to do much > more than get up and go to the bathroom. Do you live in an area where you could have acquired Lyme Disease? This is an infection caused by ticks and can look a lot like autoimmune disease. > The nurse told me I do have osteoarthritis in the hands and feet. Can > arthritis, alone, cause me to feel this way and have the swollen glands? not osteoarthritis. It can cause pain and any pain can cause fatigue - but i've never heard of osteo causing systemic symptoms such as swollen glands or mouth sores. > I apologize for rambling. I'm just feeling overwhelmed, and I don't see the > doc again till June 30th (earliest appt.). Any feedback you can give me will > be very much appreciated. No apology necessary. It sounds like the docs aren't really taking the big picture into consideration. But I think you should rule out Lyme disease or similar conditions as well. Certainly, your big picture looks suspicious to me. Unfortunately, in the states, the pendulum seems to swing from "you're just tired/stressed/etc" to " you have a 1:80 ANA, you're gonna die!" Both being very poor assessments and unfair to the patient by a large margin. Sometimes you need to establish a relationship with a rheumatologist before they start paying attention to the pattern. Was this visit to the rheumy considered a one-time thing? or were you to check back in 6 months? If you can get the ANA number, it might be more helpful to you. And sometimes we have to sort of just "act" like we have the diagnosis to get the symptoms under control. you might benefit from reading my pages... or not. :P I now get treated as a lupus patient without the official diagnosis. But you can read what I went through for several years before getting that sort of recognition as a "real" patient. http://www.ghg.net/schwerpt/kcspages/ you can also check out the ANA info in our FAQ http://www.ghg.net/schwerpt/ASLFAQ/ HTH kcat  SignatureI am not a Lupus/Fountain Pen Expert. I am not a Medical Doctor. I do not make my living in medicine or in fountain pen repair. All opinions herein are based solely on my experience and observations. Take them with a grain of salt (unless you have high blood pressure...<g>) >> wonder if I don't have lupus, though. Is it possible to have lupus, even >if the ANA and sed rates come back normal? > >yes. I kind of suspected that might be the case. But how do they ever know to get a true diagnosis? Or do the ANA and sed rates eventually elevate and stay up for a long period of time during a flare? >An ESR (sed rate) of 28 is not that high - just barely above normal . . . It would be good to find out what your actual ANA titre was. If it was 1:160 or below, it's not really too helpful for figuring out what is wrong. 1:40 is considered normal by most standards and 1:80 is usually considered a low false positive.> I will try to get a copy of my test results when I go back to the rheumatologist. I don't know what the numbers are, but I feel something definitely has to be wrong. I'm surprised the test restults came back normal. >Do you live in an area where you could have acquired Lyme Disease? This is >an infection caused by ticks and can look a lot like autoimmune disease. I guess that's a possibility. I'm in Kentucky. I don't know anything about Lyme disease. I'll check that out. Wouldn't that have shown up on all those blood tests the rheumatologist did, though? >not osteoarthritis. It can cause pain and any pain can cause fatigue - but >i've never heard of osteo causing systemic symptoms such as swollen glands >or mouth sores. I've had the swollen glands for about four months now. The mouth sores only came up in the past week. >No apology necessary. It sounds like the docs aren't really taking the big >picture into consideration. But I think you should rule out Lyme disease or >similar conditions as well. Certainly, your big picture looks suspicious to >me. > It sure feels suspicious to me too. > Unfortunately, in the states, the pendulum seems to swing from "you're >just tired/stressed/etc" to " you have a 1:80 ANA, you're gonna die!" Both >being very poor assessments and unfair to the patient by a large margin.> I believe you're right about that. >Sometimes you need to establish a relationship with a rheumatologist before >they start paying attention to the pattern. Was this visit to the rheumy >considered a one-time thing? or were you to check back in 6 months?> I do go back for a checkup at the end of this month. (Was supposed to have gone back in one month, but there were no appointments available until a two-month stretch had passed.) I am hoping she will have some other ideas. I really want to get some kind of label put on these symptoms I'm having so I'll know how to treat them. I do have the osteoarthritis diagnosis, but I don't know how often I will have to be seen for that in the future--nor what I can expect in the way of relief from the Celebrex, long term. >If you can get the ANA number, it might be more helpful to you. And >sometimes we have to sort of just "act" like we have the diagnosis to get >the symptoms under control. I think not knowing is the scariest part of this ordeal. >you might benefit from reading my pages... or not. :P I now get treated as >a lupus patient without the official diagnosis. But you can read what I [quoted text clipped - 3 lines] >you can also check out the ANA info in our FAQ >http://www.ghg.net/schwerpt/ASLFAQ/ Thanks! I will be sure to check those out. Thanks for your feedback. Karen C./KY > I guess that's a possibility. I'm in Kentucky. I don't know anything about > Lyme disease. I'll check that out. Wouldn't that have shown up on all those > blood tests the rheumatologist did, though? _______________ No. The tests are special. And false negatives are very common so be sure and go to a Dr. who treats the disease every day (even to rule it out). You can find one at http://www.lymenet.org under Flash Discussions. Kara Tyson Lyme Disease Support Group of AL >No. The tests are special. And false negatives are very common so be >sure and go to a Dr. who treats the disease every day (even to rule it >out). You can find one at http://www.lymenet.org under Flash >Discussions. At this point, I guess it's too early to tell if my rheumatologist will be a keeper or not, but I will be sure to ask about lyme disease on my next visit. Thanks for the tip. Karen C./KY > I kind of suspected that might be the case. But how do they ever know to get a > true diagnosis? Or do the ANA and sed rates eventually elevate and stay up for > a long period of time during a flare? they stay up for the most part if the disease is left untreated. And of course, there are other possible symptoms that are used to diagnose. The ACR Criteria are used and a "big picture" view of the individual's symptoms is necessary to make a diagnosis in most cases. > I will try to get a copy of my test results when I go back to the > rheumatologist. I don't know what the numbers are, but I feel something > definitely has to be wrong. I'm surprised the test restults came back normal. my initial tests weren't all that telling. I did have an elevated ESR and positve ANA titre. But the rest of my blood and chemistry tests were normal. it was a couple of years down the line before blood counts started to come in low or high (depending on the cell type). > Lyme disease. I'll check that out. Wouldn't that have shown up on all those > blood tests the rheumatologist did, though? nope. but I'm not sure how it is diagnosed. Just that it is missed now and then and mistaken for autoimmune disease. > I do go back for a checkup at the end of this month. (Was supposed to have > gone back in one month, but there were no appointments available until a > two-month stretch had passed.) you're fortunate - i have almost a 7-month wait to see my rheumy. And I live near one of the largest medical centers in the country. :P > know how often I will have to be seen for that in the future--nor what I can > expect in the way of relief from the Celebrex, long term. I wouldn't have thought of Celebrex for treating osteo to be honest. But then again, I don't know much about osteoarthritis. > >If you can get the ANA number, it might be more helpful to you. And > >sometimes we have to sort of just "act" like we have the diagnosis to get > >the symptoms under control. > > I think not knowing is the scariest part of this ordeal. scary and frustrating. you *know* your body and know something isn't right. but try telling a doctor that .. take care kcat >they stay up for the most part if the disease is left untreated. That is good to know. At least there's some consolation in knowing that it will show up to them on tests, eventually, if it's there. > And of course, there are other possible symptoms that are used to diagnose. The >ACR Criteria are used and a "big picture" view of the individual's symptoms >is necessary to make a diagnosis in most cases. I don't think I am showing enough of the symptoms, at this point, to concern the doctor--maybe one shy of four, if I recall correctly. > my initial tests weren't all that telling. I did have an elevated ESR and >positve ANA titre. But the rest of my blood and chemistry tests were >normal. it was a couple of years down the line before blood counts started >to come in low or high (depending on the cell type).> That sounds similar to what I've got going here. The ESR and ANA levels were only slightly off, just enough for the endocrinologist to tell me I needed to see a rheumatologist about my "autoimmune disease." I'm glad they pushed me to go see about it, though. >nope. but I'm not sure how it is diagnosed. Just that it is missed now and >then and mistaken for autoimmune disease.> Phooey. I thought all those tests the rheumatologist included everything imaginable. I guess not. But does Lyme disease stay in the system forever? I've felt bad for many years, but even more so since I had my daughter (13 years ago). That's when my face started flushing too. >you're fortunate - i have almost a 7-month wait to see my rheumy. And I >live near one of the largest medical centers in the country. :P Oh, my gosh! I can't imagine having to wait that long for an appointment! >I wouldn't have thought of Celebrex for treating osteo to be honest. But >then again, I don't know much about osteoarthritis. Really? As I understand it, it's relatively a common drug for osteo. What else is Celebrex used for? >scary and frustrating. you *know* your body and know something isn't right. >but try telling a doctor that .. That's exactly the way I feel. Thanks for your feedback. It helps. Karen C./KY > Phooey. I thought all those tests the rheumatologist included everything > imaginable. I guess not. But does Lyme disease stay in the system forever? > I've felt bad for many years, but even more so since I had my daughter (13 > years ago). That's when my face started flushing too. _________________ It will stay there until you take enough medication to get rid of it. Kara Tyson Lyme Disease Support Group of AL >It will stay there until you take enough medication to get rid of it. So it sounds as if a person could go through their whole life with Lyme disease and never get rid of it. That's scary. I'll definitely ask about this when I see the rheumatologist. Thanks! Karen C./KY > So it sounds as if a person could go through their whole life with Lyme disease > and never get rid of it. That's scary. I'll definitely ask about this when I > see the rheumatologist. Thanks! > > Karen C./KY ______________ Just be prepared for the Rheumi to say there is no Lyme in the South and that all you need is 10 days of doxy and you are cured. The medical community is deeply divided over this issue. > > So it sounds as if a person could go through their whole life with Lyme disease > > and never get rid of it. That's scary. I'll definitely ask about this when I [quoted text clipped - 5 lines] > and that all you need is 10 days of doxy and you are cured. The > medical community is deeply divided over this issue. My dad has lupus and contracted lymes disease (we live in the south). Try more like an entire month of antibiotic. On a good note, for some reason, it helped the lupus (discoid). V >Just be prepared for the Rheumi to say there is no Lyme in the South >and that all you need is 10 days of doxy and you are cured. The >medical community is deeply divided over this issue. Figures. I guess that shouldn't surrise me. I feel as if all I've done since 1998 is disagree with my doctors. Karen C./KY That's a common problem - - yet these people here help to keep me focused on the fact that on ly I know what goes on with this weird body. If it helps you to keep a list, then do so - some docs like it when you do that , others seem to be put off by it. I know you are frustrated and possibly scaired - hang in there and keep at them until you are satisfied with the responses you get. Leslie > >Just be prepared for the Rheumi to say there is no Lyme in the South > >and that all you need is 10 days of doxy and you are cured. The [quoted text clipped - 4 lines] > > Karen C./KY >f it helps >you to keep a list, then do so - some docs like it when you do that , others >seem to be put off by it. I know you are frustrated and possibly scaired - >hang in there and keep at them until you are satisfied with the responses >you get. Thanks! I've got that running list started for my appt. with the rheumatologist in 1-1/2 weeks. thanks, again! Karen C./KY >you might benefit from reading my pages... or not. :P I now get treated as >a lupus patient without the official diagnosis. But you can read what I >went through for several years before getting that sort of recognition as a >"real" patient. kcat: I did find your pages interesting. Now I have another question. I have had several places on my leg for several years now. One place has some kind of growth that grows for a while, then falls off. After a while, it will grow again. I actually was going to make an appointment to have it removed last week, but it fell off before the office opened so I could make the appointment. It left a little crater-type hole, about the size of an eraser head on a pencil. I do have a couple of smaller raised places on my thigh, above my knee, that have me wondering now. They're not the same type of growth as the one on my calf, but they are rough and raised--about half the eraser head size as the other. I was planning to go to the dermatologist when the one on the calf grew back, but maybe I need to see about it before it does. Karen C./KY [ >kcat: I did find your pages interesting. Now I have another question. I have >had several places on my leg for several years now. One place has some kind of [quoted text clipped - 3 lines] > It left a little crater-type hole, about the size of an eraser head on a >pencil. Woodworm? SignatureAndy Taylor [Chair, N E Lupus Group] See http://www.northeastlupus.org.uk for more! >I posted an intro a few weeks back, before I went to the rheumatologist, but it >never showed up on the group. (checks) yes, there you aren't. This does happen ;( > I thought, for sure, my ANA and sed rates would >be up when I saw the rheumatologist, but they came back normal. The only thing >the tests showed was that I have osteoarthritis in my hands and feet. I still >wonder if I don't have lupus, though. Is it possible to have lupus, even if >the ANA and sed rates come back normal? Yes. One thing that can do this is treatment by certain drugs, another is whether you are flaring or not. [] >The nurse told me I do have osteoarthritis in the hands and feet. Can >arthritis, alone, cause me to feel this way and have the swollen glands? Don't think so, but you seem to have a range of autoimmune conditions and they can make you feel like something the cat just dragged in. >My medical history includes IBS, diverticulosis, and allergy and asthma, all of >which I've had for at least 30 years. > >I apologize for rambling. No need - the only thing unwelcome here is snake oil salespersons :) Oh, and those who attach things (eg pictures) to their posts. > I'm just feeling overwhelmed, and I don't see the >doc again till June 30th (earliest appt.). Any feedback you can give me will >be very much appreciated. > >Karen C./KY SignatureAndy Taylor [Chair, N E Lupus Group] See http://www.northeastlupus.org.uk for more! >Yes. One thing that can do this is treatment by certain drugs, another >is whether you are flaring or not..> That's what I was afraid of. I think the big problem would be getting in when I am in the middle of a flare. I had to wait two months to get my return visit appointment after my initial evaluation. >Don't think so, but you seem to have a range of autoimmune conditions >and they can make you feel like something the cat just dragged in. That's about the way I feel too! >No need - the only thing unwelcome here is snake oil salespersons :) Oh, >and those who attach things (eg pictures) to their posts. I can relate; I don't like either of those types, either. Thanks for your feedback. Karen C./KY Hi Bin, Lupus affects us all in different ways, and to different degrees. You don't have to have all of the same problems or abnormal blood tests as someone else, for the doctor to make a diagnosis. I think your doctor is right in what he is saying. BJ-Sk. Canada > hi all, i need comments. > [quoted text clipped - 10 lines] > > bin The anti-dsDNA antibody is considered fairly specific for lupus. Meaning that it doesn't show up much in other autoimmune diseases. It may show up in MCTD (mixed connective tissue disease) which is a disease complex including lupus and other autoimmune diseases that appear to overlap (scleroderma, dermatomyositis, CREST) - I can see a diagnosis of Lupus being made based on what you describe. As others pointed out - lupus is a very personal disease. If you don't have any major blood count problems or evidence for major organ disease however, I would hope that your doctor is taking a fairly conservative approach (no steroids, no chemo.) JMO - I'm not a doctor. KCat KC - question - your statement - : MCTD (mixed connective tissue disease) which is a disease complex including lupus and other autoimmune diseases that appear to overlap (scleroderma, dermatomyositis, CREST) - I can see a diagnosis of Lupus being made based on what you describe does this generally mean a mix, or is it a non-speccific way of not knowing? Leslie > The anti-dsDNA antibody is considered fairly specific for lupus. Meaning > that it doesn't show up much in other autoimmune diseases. It may show up [quoted text clipped - 8 lines] > JMO - I'm not a doctor. > KCat This is what I know: MCTD consists of the overlapping clinical features of systemic lupus erythematosus (SLE), scleroderma, and myositis; and it includes these clinical and laboratory features: Raynaud phenomenon, swollen hands, arthritis/arthralgia, acrosclerosis, esophageal dysmotility, myositis and pulmonary hypertension... also it hits women to men at a ratio of 10:1 and is consistent in the 'races'. It is more prevalent than dermatomyositis and less prevalent than SLE .... so it sounds to me like a disease unto itself... fwiw... what do you think KC? from Shelagh > KC - question - your statement - : > [quoted text clipped - 6 lines] > > Leslie > does this generally mean a mix, or is it a non-speccific way of not knowing? > > Leslie MCTD is a "mix" but a distinct diagnosis as Shelagh implies. The info she posted is clearer than I can describe. UCTD (Undifferentiated Connective Tissue Disease) is the name given the cases of "we don't know but it looks a bit like lupus (or pick your CTD) so we'll call it UCTD." Some people mistakenly use MCTD and UCTD interchangeably. To add to the confusion there is also ILE - Incomplete Lupus Erythematosus which might be best described as something between UCTD and SLE. :P ILE is a term that is relatively new to me but I don't know how new it is to the medical community. It is apparently given to patients who meet many of the SLE criteria but lack the antibody levels necessary for a full SLE diagnosis. This may be a medical community response to sero-negative patients. sigh.. are we having fun yet? Go and read this if you really want to get mixed up LOL! I sent it to hooi-bin when she asked about her loopie dx.... if it was real or? Rhupus anyone? http://tinyurl.com/2uezd from Shelagh > > does this generally mean a mix, or is it a non-speccific way of not > knowing? [quoted text clipped - 18 lines] > > sigh.. are we having fun yet? confused? who me? well you know they love to spew forth the acronyms (I call Alphabish) and then wonder why we are dazed and confused! thanks Leslie > Go and read this if you really want to get mixed up LOL! > I sent it to hooi-bin when she asked about her loopie dx.... if [quoted text clipped - 34 lines] > > > > sigh.. are we having fun yet? |
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