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Recent Diagnosis
Question:
Hello, I am 32 yrs. old, married, 3 children, and a full time job. I have noticed over the last 3 years since the birth of my youngest, some mild joint pains, mostly in my wrists and fingers. I do type alot and at work I type just about all day. I love the work that I do and I’ve always loved typing. About a year and a half ago I had some cosmetic surgery and got saline breast implants. I have noticed that for about the last 3 months though my wrists and fingers have gotten worse and I thought I might have Carpal Tunnel Syndrome. I decided to go to the doctor, first time ever with my complaint of joint pains. She stuck a thin pin in several places on one hand and then the other and various other things with my hands and came up with a diagnosis of Tendonitis. I have to wear a splint on my right hand for a month and she prescribed Daypro 600 mg. twice a day for a month too. She also wanted to get some blood tests done. There were 4 vials of blood taken on me, one to test for Thyroid Disease, one to test for Anemia, one to test the SED Rate, and the last was a FANA test. Well, yesterday my doctor called me with the results. My thyroid test came back ok, and I’m not amemic, but the SED rate was 75 and my FANA was 1:1280. She said it was strongly evident that I have Lupus and she is going to refer me to a Rheumatologist. I am very shocked about this and wonder if that’s really what I have at all. I do not have many symtoms relating to Lupus. I only have some joint pains, some swelling, some fatigue and some mental confusion (that seems normal for me though). I don’t have any rashes and I’m not sensitive to the sun… as a matter of fact the sun feels very good on my face and puts me in a good mood. I am so outdoorsy anyway. I have so many questions and I’ve been reading alot of books. But what I am specifically wondering is if maybe my having getting the saline implants a year and a half ago would make my SED rate be high or even the FANA test? Or could it be from the implants that I may have gotten the Lupus in the first place? I called my cosmetic surgeons office today and they said that I could not get Lupus from my Saline Implants. Any opinions? Replies welcome. Connie
Response:
<<I am very shocked about this and wonder if that’s really what I have at all. I do not have many symtoms relating to Lupus. I only have some joint pains, some swelling, some fatigue and some mental confusion (that seems normal for me though). I don’t have any rashes and I’m not sensitive to the sun… as a matter of fact the sun feels very good on my face and puts me in a good mood. I am so outdoorsy anyway. Not everyone with lupus is sensitive to the sun. I believe the incidence is somewhere around 35-50%. Mental confusion, fatigue, joint pain and swelling are all symptoms common with lupus. However, you’re right that this still might NOT be lupus at all. Still, it’s likely not nothing either. There are other diseases similar to lupus which need to be ruled out, plus you need blood work to see if you have any other antibody titers or blood abnormalities. You really need to have this followed-up with a rheumatologist like your doctor says. You’re lucky to have a rather enlightened and astute doctor. Too many would blow off your test results and symptoms, and send you away with no referrals. I know how shocking this is because we’ve just gone through all of this, but it’s necessary to investigate it further. You can live well with lupus, but you need to be informed. Sandra
Response:
I"m not sensitive to the sun either, where in some causes the rashes. But the sun does make me swell and become stiff, so I guess maybe I am sensitive in away. I’m an outdoors person myself, and have learned how much is too much. But too, you never know, could change for that matter, I’m never the same from one day to the next.
Response:
Hi Connie, Your rheumatologist is the only one qualified to diagnose you. However, it is unusual to have such a high ANA titer without having an underlying rheumatic disease. My symptoms started out much like yours. For years I had joint pains and fatigue but about 5 years ago started having problems with photosensitivity. You didn’t mention any other blood tests. Your rheumie should do a CBC, SMAC and Urinalysis to check for other organ involvement or low wbc/rbc counts (often seen with Lupus and other autoimmune disease). It’s important to know that in the US you must fit at least 4 of the American College of Rheumatology’s SLE Criteria. Your rheumie may not find that given your description of your symptoms. In which case, with that high ANA you may be given a diagnosis such I was initially given "Rheumatism with Lupus-Like symptoms". But your ESR and ANA are definitely not to be ignored at those levels. It may not be lupus, it might be RA. I imagine your Rheumatologist will check for RA as well as other autoimmune probabilities. Recognize that not *all* lupus patients have photosensitivity though many eventually develop it after disease has progressed. My sister has little *sun* sensitivity but becomes ill when exposed to fluorescent lighting for too long (Does shopping in brightly lit, unprotected lighting grocery stores or the like tire you out more than you would think reasonable?) I long hated shopping at Walmart or the grocery store (and even some department stores only put baffles on their lights (which just distributes the UV more evenly) because I inevitably got sick to my stomach or just extremely fatigued. But it wasn’t until I started getting sun sensitivity tht I made the connection. Why one did more damage first I don’t know. Anyway… There are 11 major criteria (some of which include several possibilities per category) that are used to dx this disease as well as family history. Your doc willl go through all of these. I"m not a doctor so I’m only guessing that you *might* have RA rather than Lupus. But the above tests mentioned, and others are required to determine that. Recommend you read the Hamline Lupus pages or the LFA’s pages which will have a list of these criteria and some of the ways the disease is diagnosed. hamline: http://www.hamline.edu/lupus LFA uhh… http://www.lupus.org/lupus I think…. On Wed, 10 Mar 1999 22:08:11 -0500, "Connie" <stars…@mindspring.com
wrote:
Hello, I have so many questions and I’ve been reading alot of books. But what I am specifically wondering is if maybe my having getting the saline implants a year and a half ago would make my SED rate be high or even the FANA test? Or could it be from the implants that I may have gotten the Lupus in the first place? I called my cosmetic surgeons office today and they said that I could not get Lupus from my Saline Implants. Any opinions? Replies welcome. Connie
Though implants are blamed for "triggering" SLE in some people. They can not *cause* the disease. Being saline I would doubt that they are really the culprit here. SLE and DLE (Discoid (skin) Lupus) are genetic predispositions. That is, they are not a genetic disease in the sense that there is a single gene that causes them. But their are a set of genes that one inherits that make one more susceptible to the disease and if your immune system improperly selects antibodies (meaning it allows wbc’s to exist that create antibodies to the self) then you will have an autoimmune condition. Whether it progresses to SLE, DLE, RA, Scleroderma, etc. will depend on the individual and their autoantibody repertoir. But no, your implants can *cause* the disease. It’s possible that silicone implants trigger the disease but then so can strong food allergic responses, insect bites/stings (multiple), a long sun-bathing effort (what triggered my first bout with photosensitivity), extreme physical or emotional stress, an injury, surgery, a bad virus, etc. Just about anything that stresses the body for any length of time, can trigger flares of autoimmune disease. That is why even if you aren’t photosensitive now, you should take precautions to avoid becoming so (use sunBLOCK, wear a hat, etc). Well, I’ve rambled enough for this time. (more than enough by some folks standards). Feel free to visit my website or write to me and feel free to hit the group with specific questions. kc posted and emailed (p’d and e’d) ******************** kc cat kcdoc…@ghg.net http://www.ghg.net/schwerpt/mypage.htm ()() ().–.() (__) ()() ().–.() (__)
Response:
On Thu, 11 Mar 1999 22:34:46 -0800, "Paul Blake" <kbl…@kwic.com
wrote:
Same thing just happened to me. I was in for some pains in my foot & the doc did an ANA . He says my (never severe but often apparent) back pain was due to lupus arthritis because of the ANA at 1:640. I question this diagnosis myself, I have no other symptoms but regular bowel inflammation which I don’t know is Lupus related. I love the sun. I am just wondering if I have GETTING the other symptoms to look forward to! Any ideas group?
What kind of doc was this? This is a bit of a stretch IMO. 1:640 is about the lowest a rheumie will go to diagnose lupus and you need more than that and some back pain to diagnose the disease. IBS is *very* common in SLE and is sometimes caused by vasculitis (but this is hard to detect). Have you ever had a colonoscopy? A colonoscopy with biopsy of possible lesions would determine if this is a lupus related problem rather than some other reason for the IBS. biopsies of lupus lesions whether on the outside or inside of the body will show high ANA titers (very high usually). My suggestion is that if you haven’t seen a rheumie, that you do so and go through the whole round of questions and examination before accepting this dx. it may be that you are in the early stages of sle and that over time other symptoms will develop. As I often say though – just because you can be a sunworshipper now does not mean it will remain that way. But it could be RA which usually (but not always) doesn’t include the internal effects that lupus does. RA will often show a positive ANA too. kc ******************** kc cat kcdoc…@ghg.net http://www.ghg.net/schwerpt/mypage.htm ()() ().–.() (__) ()() ().–.() (__)
Response:
The positive ANA doesn’t point irrevocably at lupus. Look at the Immunology Lab Test Chart at http://www.labmed.washington.edu/Division/Immunology/ref_chart.html —
Response:
- Hide quoted text — Show quoted text -Connie wrote:
Hello, I am 32 yrs. old, married, 3 children, and a full time job. I have noticed over the last 3 years since the birth of my youngest, some mild joint pains, mostly in my wrists and fingers. I do type alot and at work I type just about all day. I love the work that I do and I’ve always loved typing. About a year and a half ago I had some cosmetic surgery and got saline breast implants. I have noticed that for about the last 3 months though my wrists and fingers have gotten worse and I thought I might have Carpal Tunnel Syndrome. I decided to go to the doctor, first time ever with my complaint of joint pains. She stuck a thin pin in several places on one hand and then the other and various other things with my hands and came up with a diagnosis of Tendonitis. I have to wear a splint on my right hand for a month and she prescribed Daypro 600 mg. twice a day for a month too. She also wanted to get some blood tests done. There were 4 vials of blood taken on me, one to test for Thyroid Disease, one to test for Anemia, one to test the SED Rate, and the last was a FANA test. Well, yesterday my doctor called me with the results. My thyroid test came back ok, and I’m not amemic, but the SED rate was 75 and my FANA was 1:1280. She said it was strongly evident that I have Lupus and she is going to refer me to a Rheumatologist. I am very shocked about this and wonder if that’s really what I have at all. I do not have many symtoms relating to Lupus. I only have some joint pains, some swelling, some fatigue and some mental confusion (that seems normal for me though). I don’t have any rashes and I’m not sensitive to the sun… as a matter of fact the sun feels very good on my face and puts me in a good mood. I am so outdoorsy anyway. I have so many questions and I’ve been reading alot of books. But what I am specifically wondering is if maybe my having getting the saline implants a year and a half ago would make my SED rate be high or even the FANA test? Or could it be from the implants that I may have gotten the Lupus in the first place? I called my cosmetic surgeons office today and they said that I could not get Lupus from my Saline Implants. Any opinions? Replies welcome. Connie
The symptoms you have given sound a lot like lupus. I had most of them before my diagnosis. I was not sun sensitive at first, but am extremely now. With a sedrate of 75 something is definitely wrong. My rheumy increases my prednisone when mine is 30. I too am allergic to sulfa and was before the lupus. Just before my diagnosis I had sinus infections, bladder infections, laryngitis, lost weight, was tired, couldn’t sleep, joint and muscle pain, numbness and many more things. No one seems to know exactly what triggers lupus, so it could have been something you haven’t thought of. My mother had rheumatoid arthritis and later lupus. I have a teenage neice who tested positive for it, but doesn’t show any signs of it. My mother’s sister was just diagnosed with rheum. arth. and possibly lupus. I agree, you need to see a rheumatologist. They did blood work and a skin biopsy on me and said it all had to fit together like a puzzle and it did. Good luck. Mary
Response:
Same thing just happened to me. I was in for some pains in my foot & the doc did an ANA . He says my (never severe but often apparent) back pain was due to lupus arthritis because of the ANA at 1:640. I question this diagnosis myself, I have no other symptoms but regular bowel inflammation which I don’t know is Lupus related. I love the sun. I am just wondering if I have GETTING the other symptoms to look forward to! Any ideas group?
Response:
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