I feel that I have Lupus.
I had a pos ANA
Nephritis
photosensitivity
mouth ulcers
unexplained hives & rashes
horriblr joint pain
multiple inflamitory issues
visual distrbences (SP)
I am a mail carrier and I don't think I can go much further. Without a firm diagnosos I can't move forward with disability retirement.
Winter is the worst and I don't know what to do, my job is killing me
I'm only 26 and I look like I'm 36 and feel like i'm 46 I've been tested for MANY things was neg for syphillis, lyme, ms
a few Drs said they thought it was lupus and the rheumatologist says he wants to see me present with each of these problems in HIS office to diagnose me eventhough they are all documented in my records, Right now he says Fibormayalsia and probably lupus but wont put it on paper Hi I am Chris, I have Lupus, co-own a lupus support group, and do a lot of research for them. I think you found your rhuemotologist in a box! First, there are 11 crietera. You meet 5 of 11. Second they do not have to happen all at 1 time, and frankly rarely do. so he has his head in the sand, get a different rhuemotologist. If you do have nephritis, you need immunosuppresent medications yesterday, Photosensitivity a medication in the class called antimalariels called plaquinil, somthing for your pain, mouth ulcers, and rashes. Many dr's on the other hand (but none when kidneys are in danger do hesitate to diagnosis is and put it on paper because it now seems to be a diasese that is kind of the dieases thats the flavor of the month.
I was diagnosed over 12 years ago, started showing symptoms at 13, Im 40 in oct. but no Kidney involvment. Call insurance company, but first get paper proof of Kidney dysfunction, so theres no disputing that fact and say hey, I need another doctor. He dosnt sound willing, knowledable or able.
Im listing the 11 critera. As I said they do not have to happen at 1 time, you may get 1-3 at a time, maybe more, but not all you symptoms are part of the critera.
Ill also leave you links to several places.
Lupus is not normally fatal anymore, with early detection, and treatment. You need both. Good Luck, get a doctor, and support. Chris
Diagnostic criteria for lupus
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Last Updated: June 29, 2004
Diagnostic criteria for lupus
The following criteria are used to distinguish lupus (systemic lupus erythematosus, or SLE) from other autoimmune and rheumatic diseases.
A person with 4 of these 11 conditions can be diagnosed with lupus; 3 symptoms suggest that lupus is probably present, and 2 raise the possibility of lupus. Symptoms may be present all at once or appear in succession over a period of time. 1
Butterfly (malar) rash on cheeks
Rash on face, arms, neck, torso (discoid rash)
Skin rashes that result from exposure to sunlight or ultraviolet light (photosensitivity)
Mouth or nasal ulcers, usually painless
Joint swelling, stiffness, pain involving two or more joints (arthritis)
Inflammation of the membranes surrounding the lungs (pleuritis) or heart (pericarditis). This inflammation is called serositis.
Abnormalities in urine, such as increased protein or clumps of red blood cells or kidney cells, called cell casts, in the urine
Nervous system problems, such as seizures or psychosis, without known cause
Problems with the blood, such as reduced numbers of red blood cells (anemia), platelets, or white blood cells
Positive antinuclear antibody (ANA) test
Signs of increased autoimmunity (antibodies against normal tissue), as shown by laboratory tests
References depending on where you live, like the east coast has more outbreaks of Lyme Disease. Google search lyme disease.
and check out www.webmd.com you might diagnose yourself.
My daughter has it. JOint pain, (arthritis, visual, numbness tingling, heart races , sweats, fever flu etc..on and on Lupus is very difficult to diagnose.. which is probably why he hasn't given a firm diagnosis.. You might consider he consult with another doctor or ask for a second opinion. Why do you think it's lupus and not something else?
http://www.lupus.org/education/articles/... Lupus does sound like a possibility: There are others. You're physician is likely trying to rule out all of the possible diagnosis.
If you turn your attention to http://www.lupus.org you'll find that even the consumer site does expresses how difficult it is to diagnosis Lupus. First, there's no single set of symptoms that are uniformly specific to lupus and there are no laboratory tests can prove that a person has or does not have lupus. We can test for other possible causes of the symptoms to essentially rule those possibilities out.
For example, we can rule out HIV by testing for it, and retestin in a year or two. We can rule out many other diseses as we look at the symptoms and patterns. For example, just because you have photosensitivity doesn't mean we shouldn't consider a neuological infection like meningitis.
If we simply diagnosed every person with any one of a hundred symptoms as having lupus, many people would die from not getting the right treatment. That's why you're seeking disability, because Lupus is accredited to a battery list of problems that essentially serve as a disability over time and progression.
I don't know from your description but there is a standard diagnosis for Lupus issued by the American Rheumatism Association in 1982 which includes any 4 of the following: Malar Rash; Discoid Rash; Photosensitivity; Oral Ulcers
Arthritis; Serositis; Renal disorder; Neurologic disorder;
Hematological disorder; Immunologic disorder; Positive fluorescent antinuclear antibody (FANA) or ANA test result. These conditions then must be matched to a physician testing and clincially assessing the patient and not finding a cause for each of the 4 or more presentations.
You clearly have 4 criteria, so this is what you do:
1. Take this list and get all your records (ask for a copy, you are entitled to one copy of your record at cost). If you use many doctors (I don't think so), get those together from all doctors for the specific conditions noted. Group together.
2. Ask for a referral to a Rheumatologist from your Doctor (if he is not one). A Rheumatologist charges a few hundred for a second opinion, and I have paid for 2nd opinions out of pocket, so do what you need to if you hit a bump in the road.
3. See a Rheumatologist, give him or her a Copy of everything you were given, and ask if he or she can make a diagnosis for you, and explain why its important.
The Above is my bone fide opinion. I express and imply no liability or guarantees. Using or ignoring these words are at your own risk. Reader assumes all risk. This is not a medical diagnosis. go to another doctor. I was diagnosed with ms with lupus by nero doc first rheumatologist keep going back and forth with diagnose even though all test results said lupus. after about 6 months of that i was being sent to mayo clinic but very luck to get in to the head of rheumatoly clinic here at unc .with in one week i was diagnose with sle and ss which issjogren's syndrome which is like a side kick diesease of lupus. and finally going to be able to rule out ms which is great no more shots so please find a nother doc your health is to important . Keep safe and as healthy as possible please write back and let me know how you are doing |
