PLEASE HELP tests showing negative
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From: zacdesai on 1 Oct 2005 05:44 Hi, Very briefly, I started experiencing pains and problems with my joints earlier this yr.Prior to it starting I was trying to get grips with a neck and lower back problem diagnosed as being a pinched nerve.Anyway I was taking muscle relaxants for the spasms and 1 day noticed my bones had a dry sorta feeling.If i shrugged my shoulders could feel joints clicking.Thought it was the meds and went off it.Symtoms subsided but came back recently.Had sharp pains sometimes like pricking needles in my knees, big, toes, elbows & fingers.Also I cant quite describe the feeling but the muscles in arms and legs sometime feel as if rubbery-like and seems like sensation inside the muscles are less. I dont know whats goin on - went for some tests ESR, Haemoglobin, Urea, s-c reactive protein, Rheumatoid factor, anti-nuclear factor. And my GP says all looks fine. Please help me with some info! I started this "dong" diet fish & veggies - pain seems to have went down but some symtoms still there and I think im losing weight. Could somebody please shed some light on whats goin on? I thank God for everybodies help - gives a glimmer of hope and pray that all of you find help and get well SOON. Thanks! Zak
From: William R Thompson on 1 Oct 2005 08:54 <zacdesai(a)ananzi.co.za> wrote: > Hi, > > Very briefly, I started experiencing pains and problems with my joints > earlier this yr.Prior to it starting I was trying to get grips with a > neck and lower back problem diagnosed as being a pinched nerve.Anyway I > was taking muscle relaxants for the spasms and 1 day noticed my bones > had a dry sorta feeling.If i shrugged my shoulders could feel joints > clicking.Thought it was the meds and went off it.Symtoms subsided but > came back recently.Had sharp pains sometimes like pricking needles in > my knees, big, toes, elbows & fingers.Also I cant quite describe the > feeling but the muscles in arms and legs sometime feel as if > rubbery-like and seems like sensation inside the muscles are less. I > dont know whats goin on - went for some tests ESR, Haemoglobin, Urea, > s-c reactive protein, Rheumatoid factor, anti-nuclear factor. And my GP > says all looks fine. Please help me with some info! I started this > "dong" diet fish & veggies - pain seems to have went down but some > symtoms still there and I think im losing weight. Could somebody please > shed some light on whats goin on? I'm in the same boat as you (the Titanic, I think): all my tests results come back negative, but I still have lupus-like symptoms. Someone better-informed than me will give you this address: http://www.northeastlupus.org.uk/ which is a great place to find information on lupus. What medication(s) do you take? Some drugs can cause lupus symptoms. Lupus flares can be provoked by quite a few things. Ultraviolet light (in sunlight and fluorescent lights) can do it. So can alcohol and stress. Do you keep a diary of what you do/eat/drink and of when your problems grow worse? In hindsight, is there anything that happened before all of your flares, such as spending an unusually long time in the sun? Did the doctor say your problems were psychosomatic? I swear, that particular "diagnosis" ought to be on any list of lupus symptoms. --Bill Thompson
From: Andy on 1 Oct 2005 09:21 In article <KFv%e.6581$vw6.1383(a)newsread1.news.atl.earthlink.net>, William R Thompson <wrthomps(a)ix.netcom.com> wrote [] >In hindsight, is there anything that happened before >all of your flares, such as spending an unusually long time in the sun? > - a day or three beforehand, rather than the same afternoon. -- Andy Taylor [Chair, N E Lupus Group] See http://www.northeastlupus.org.uk for more!
From: Candi Bowen on 2 Oct 2005 14:17 Hi there, I've been there too. In my case, it eventually turned up anti-RANA & anti-cardiolipin positive. The anti-RANA test isn't done routinely any more & is more of a marker for RA than lupus so I have Rhupus, but I've also read that the anti-RANA is an older test for anti-RO. Here's some info about other tests that can be done. This is according to Dr. Daniel Green. This is old info & I believe that there are even MORE tests that can be done. Many of the antibodies fluctuate, & not necessarily according to disease activity, so need to be repeated often if your doc suspects connective tissue disease. I was lucky in a way; I dated my doc & we almost married, so he had my medical records for many years & actually BELIEVED me. Also, if you're photosensitive you may not have a flare for several months, not necessarily a few days. Good luck to you. Candi There are other tests if a person has a negative ANA and is still suspected of having lupus; for unknown reasons, in a small amount of patients, 1) the old LE-cell prep test will be positive; 2) there are new markers for lupus - Anti-MA, Anti-Ki, Anti-Me (undifferentiated CTD); 3) Anti-nRNP & anti-u1-RNP (MCTD); 4) Anti-centromere (CREST); 5) Anti-PCNA (common in SLE); & 6) Anti-HSP90 (specific for MCTD), 7) anti-cardiolipin, 8) the lupus band test, highly conclusive if the photosensitive rash is biopsied, 9) anti-EA (Ro, La, Sm, RNP) Per Dr. Daniel Wallace November 26, 1997 Q: How is it possible that a person can be very ill with lupus, yet lab tests can come back as normal? A: 98% with sle have a positive ANA but many lupus patients with non-organ threatening disease have normal blood testing otherwise but do not feel well its difficult, but there are specialized tests relating to specific symptoms such as bone scanning or a lupus band test that can be done to ascertain whether a specific complaint is from lupus. Q: Why does the ANA fluctuate so much...how can you be in a flare and have a negative ANA? And if you have 4 out of the 11 lupus criteria without a positive ANA...why do some drs not diagnose you with sle? A: A negative ANA is uncommon. It is seen in the following circumstances: discoid lupus, antiphospholipid syndrome, or after high doses of chemotherapy or steroids. If these circumstances do not apply, consider that lupus may not be the correct diagnosis. ANAs fluctuate because it is not a standardized test and what is positive in one lab is not necessarily the same titer in another. ANA levels are only a rough correlate. Letter from Dr. Peter Schur (Professor of Medicine; Brigham and Women's Hospital) December 12, 1995 "only 14 of 10,000 lupus patients had a negative ANA. Symptoms such as photosensitivity, nasal ulcers, pleurisy, joint pain with swelling, and having a bald spot makes one strongly suspect lupus. Therefore, I would agree with your doctor in saying that you probably have lupus and treat you accordingly." There is a new test available to pick up the suspected 20% of people with lupus who have a negative ANA.
From: zacdesai on 2 Oct 2005 15:03
Thanks - appreciate the time & help. |