Hello: This is a slight twist on a similar question I recently asked-did many of you have health problems yet still have normal labs? I just had a terrible reaction to a tetracycline antibiotic with very painful muscles followed by joint pain. My pharmacist told me this was an unusual side effect, that those meds don't cause a lupus like syndrome, but can unmask an existing condition. I couldn't even complete a ten day course of the drug because of the pain. My doc checked my sed rate and ck. Both were normal. I can't believe my tests would come back normal when I'm in that much pain. He is referring me to a counselor because I'm depressed (I am) and I refuse to take antidepressants. I feel like never going back to the doctor again because the only positive lab tests I've had are ANA, antiphospholipid antibodies, anti-thyroid antibodies, and low iron. Any response is appreciated. Susan
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Mizzkitty
05-16-2001, 04:59 PM
Hello-
I am a newbie, but i have had lupus for some time. I think there was a previous post down below to your first post on this subject....it mentioned Fibromylgia...some of the things you are mentioning kinda sound like that. It too is an Autoimmune dissorder, but it seems to go for the muscle structure instead of the joints. That is why the muscles seem to ache ect and feel like you have the flu (or someone came into your bedroom at night and beat you with a stick!) But i feel that way too , lupus can make that happen as well. And of course you are depressed...it is depressing when you hurt all the time and it interferes with things you want to do! Luckily i have a very kind dr..i had to go thru 3 till i found one! I wish i could help you more, but i would check out the fibromylgia - i warn you , it is also hard to diagnose. Good luck and i wish you the best.
SailormoonK
05-16-2001, 10:04 PM
wait a minute you have a positive ANA and they refuse to believe you? mine is negative but i have so many other symptoms that they finally admited i have an AI but refuse to treat it. i also was accused of depression. i agreed to take anti depressants because i was promised medical treatment if i did they still fail to treat me. i dont get it do we have to die before they will treat us like we arent crazy? i am sorry to hear that you are getting such poor treatment with positive blood work, have you seen a ruemetologist? or gotten a second opinion? because i think you need one. i am sorry, but all my blood work is negative, yet my doctor claims he will treat me if my ANA ever comes up positive an then refuses to retest my ANA. ANA is one of teh 11 criteria.
SusanM
05-17-2001, 05:53 PM
ANA is one of the criteria, and so are antiphospholipid antibodies, but you need four out of the 11 or 12 criteria. I have had other problems like an autoimmune thyroid disorder, rashes that don't clear with treatment, hair loss, fatigue etc. but don't have any of the other criteria. I have had muscle pain, and some slight joint pain. I had very bad muscle and joint pain following the recent course of antibiotics, and I'm very sensitive to medications in general. My doctor was the one to initially bring up the possibility of lupus, but the other labs that test for the disorder have never been positive. So I'm left not knowing. Susan
Ann S
05-18-2001, 12:51 AM
Susan,
If the ANA was positive, but not the other tests, they sometimes just dx it as mixed connective tissue disorder. Sometimes it evolves into a specific area and your other specifc tests turn positive, and sometimes it doesn't. In just 2 months time, three of my tests went from neg. to pos. They need to keep testing every few months! I was diagnosed with just a pos. ANA and prescribed 4 different meds, now some of the other tests are turning positive. In some ways it's a relief to get diagnosed, but when they start turning pos., you lose the last hope that it was all a big mistake and you'll wake up from this nightmare! Take care, Ann
SailormoonK
05-20-2001, 07:36 PM
i did some looking and finally found the 11 criteria list i had i will paste it into this message. hopefully it will help you figure out what to talk with your doctor about. i am also including the definitions of each criteria. i am unsure whether or not your doctor really explained the criterea or not. it was never explained to me.
TABLE 2
THE ELEVEN CRITERIA USED FOR
THE DIAGNOSIS OF LUPUS
Criterion
1. Malar Rash Rash over the cheeks
2. Discoid Rash Red raised patches
3. Photosensitivity Reaction to sunlight, resulting in the development of or increase in skin rash
4. Oral Ulcers Ulcers in the nose or mouth, usually painless
5. Arthritis Nonerosive arthritis involving two or more peripheral joints (arthritis in which the bones around the joints do not become destroyed)
6. Serositis Pleuritis or pericarditis (inflammation of the lining of the lung or heart)
7. Renal Disorder Excessive protein in the urine (greater than 0.5 gm/day or 3+ on test sticks) and/or cellular casts (abnormal elements the urine, derived from red and/or
white cells and/or kidney tubule cells)
8. Neurologic Disorder Seizures (convulsions) and/or psychosis in the absence of drugs or metabolic disturbances which are known to cause such effects
9. Hematologic Disorder Hemolytic anemia or leukopenia (white blood count below 4,000 cells per cubic millimeter) or lymphopenia (less than 1,500 lymphocytes per cubic millimeter) or thrombocytopenia (less than 100,000 platelets per cubic millimeter). The leukopenia and lymphopenia must be detected on two or more occasions. The thrombocytopenia must be detected in the absence of drugs known to induce it.
10. Antinuclear Antibody Positive test for antinuclear antibodies (ANA) in the absence of drugs known to induce it.
11. Immunologic Disorder Positive anti-double stranded anti-DNA test, positive anti-Sm test, positive antiphospholipid antibody such as anticardiolipin, or false positive syphilis test (VDRL).
SailormoonK
05-20-2001, 07:38 PM
sorry forgot to add you only have to meet 4 of these criteria to have a diagnosis and that it can be made with fewer as long as you are monitored.