Are there varying levels of disease?
Like I said on the other forum my wife has only some of the symptoms of lupus.
She has not been near death nor been so weak that she can barely stand...but she is growing weaker.
Her doctor is doing another blood test before he completely rules out lupus.
I happen to think he is trying hard but might still be wrong.
My wife is going to lose her sanity if we can't relieve her pain or something.
One test in the past came back positive and I don't know what he is testing for now.
Please direct me. My wife has suffered for years with varying sypmtoms.
Osage, I'll say it again, you're a wonderful person to be such a support to your wife.
Managing pain is so difficult. I suggested massage, I'll also suggest some of the things that some people try with varying degrees of success. Often pain is from inflamation, so reducing inflamation is a good thing. Ways to do that - increase your intake of fish oil and eat salmon or other cold water sea fish. Increase your intake of ground flax seed, another good omega source. Spices - turmeric and ginger - have been used in India for years so help manage pain.
Some find eliminating nightshades from their diet - tomato, potato, green peppers, eggplant - will reduce pain. Others get relief from eliminating wheat or gluten. Still others find citrus to be problematic. If you eliminate a food, it can take weeks for the effect to show up, but it can help.
Finally, a massage therapist or a chiropracter might be able to help those knotted neck muscles. But stress the need for being gentle!
Take care, and let us know how she is doing!
Lupus is a difficult disease to diagnose, & can be overlooked, often for years, unless the GP or consultant is alert to it's possibilities. There is an established list of 11 abnormalities which, when combined, point to lupus.
To make a diagnosis of Lupus the patient must have had at least FOUR of these 11 manifestations at any time since the onset of the disease.
1 Malar rash - fixed red rash over the cheeks
2 Discoid rash -red patches of skin associated with scaling and plugging of the hair follicles
3 Photosensitivity-rash after exposure to sunlight
4 Mucosal ulcers- small sores that occur in mucosal lining of mouth and nose
5 Serositis-inflammation of the delicate tissues covering internal organs and abdominal pain
6 Arthritis- very common in lupus, pain in the joints
7 Renal disorders- usually detected by routine blood and urine analysis
8 Neurological disorder- seizures or psychosis
9 Haematological disorder -haemolytic anaemia, leukopenia, thrombocytopenia
10 Immunologic disorder -tests on LE cells, anti-DNA and anti-SM antibodies
11 Anti-Nuclear Antibody (ANA blood test) -when found in the blood and the patient is not taking drugs, it is known to cause a positive test for lupus in most cases, but is not necessarily conclusive.
The following usually occurs when diagnosing lupus:
Medical history–Telling a doctor about your symptoms and other problems you have had can help him or her understand your situation. Your history can provide clues to your disease. Use a checklist to keep track of your symptoms. Share this checklist with your doctor. Ask your family or friends to help you with the checklist or come up with questions for your doctor.
Complete physical exam–The doctor will look for rashes and other signs that something is wrong.
Laboratory testing of blood and urine samples–Blood and urine samples often show if your immune system is overactive.
Skin or kidney biopsy–In a biopsy, tissue that is removed by a minor surgical procedure is examined under a microscope. Skin or kidney tissue examined in this way can show signs of an autoimmune disease.
Here are the blood tests that doctors will run when testing for lupus:
Full Blood Count (FBC) - Detects anaemia, low platelets, low white blood cells.
Creatinine and electrolytes - Measures the salts in the blood and gives an idea of kidney function.
Liver function tests - Includes measurement of liver enzymes (indicator of liver cell damage). Measures albumin (marker of kidney problem with leakage of the proteins).
ESR (Erythrocyte Sedimentation Rate) - A marker of non-specific inflammation, tends to be raised in lupus.
CRP (C-reactive protein) - Another inflammatory marker, but this does NOT usually go up in Lupus
Urine - Measure protein and blood cells in urine (should be none). Identify ‘casts’ (blobs of protein escaped from the bloodstream because the kidneys are leaky)
Blood clotting tests - Tell how ‘sticky’ the blood is. Includes ‘lupus anti-coagulant’
Other blood tests that are sometimes given are for individual types of autoantibodies that are more specific to people with lupus, although not all people with lupus test positive for these and not all people with these antibodies have lupus. These antibodies include anti-DNA, anti-Sm, anti-RNP, anti-Ro (SSA), and anti-La (SSB). The doctor may use these antibody tests to help make a diagnosis of lupus, according to the National Institute of Arthritis and Musculoskeletal and Skin Diseases. A biopsy of kidney tissue or skin may be taken as well.
Perhaps this information will help you understand the tests when you and your wife next visit her doctor. Please try not to over stress yourself. Continue to do what you are doing, educate yourself on her behalf and offer her support, understanding and comfort.
You are wonderful for doing this!
Peace and Blessings
hatlady and saysusie thanks and
I appreciate both the practical pain management ideas. My wife will try ANYTHING.
I also appreciate someone taking the time to explain the tests.
I am perfectly capable of understanding anything a doctor knows if he will put it in layman's terms. Most wont. And I have not even lost my temper while in their presence...yet.
I will let my wife know all these things.