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Thread: Newbie who is trying to deal with possible Lupus

  1. #11
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    Hi Marycain

    Thank you

    Your explaination of this Criterion brings the number that I have to maybe 7 or 8. (#9 have to go over blood work. At this moment I no longer think I have a problem with this.)

    1. I still get the Malar rash on my face.

    2. Discoid Rash I have had this on my face? (pimple like around mouth), arms , back (had wart like things removed from back and now are back - will talk to doctor about this) and chest. Theses marks here have left scars. The marks on my legs likely psoriasis. On my back had large eruption, documented at local hospital, they said not shingles. Now believe it was Dicoid Rash.

    3. Photosensitivity problem has been a problem since 1992

    4. Oral Ulcers, I have had these off and on, and never had I showed the doctor I guess I will have show to them to the doctor next eruption, these are non painful.

    5. Arthritis: I believe my crohn's disease, and sjogrens may fall under non-erosive arthritis. I have couple other things going on will have to confirm if they fall under non-erosive. I get a lot of painful ulcers in my mouth, will have to talk to GP about this. Also Rheumatory arthritis runs in the family. My RF is still registering below 20 which is negative.

    6. I have small amount of fluid around heart. They say it's from pericardial effusion and this has been documented by the cardiologist. I told him I have a referral to a Rheumy. Had I not had the referrral he was going to make the referral himself. I go back to see cardiologist in a year or sooner if need be.

    7. I will have to go over my medical records to see what was determined re the "Excessive protein in the urine (greater than 0.5 gm/day or 3+ on test sticks) AND/OR cellular casts (abnormal elements in the urine, derived from red and/or white cells and/or kidney tubule cells). Generally, the tests must be abnormal on at least two separate instances to be considered. " The blood in my urine is ongoing and so is the cellular casts. (GP dropped me and no futher followup was done in regard to this. Will have to get my new GP do a followup in regard to this. The measurements I will also confirm this from the records I have.

    8. I guess having the doctor want to commit me to the psyco ward and documented as conversion disorder falls under this catagory.

    So I don't believe I am off the hook yet for Lupus.

    Your information is very much appreciated. You have given me very thorough documentation about Lupus. I will get documentation from hospital about the Discoid Rash on my back, and the documentation from dermitologist about the removal of the wart like lesions from back.

    The malar rash can be seen on my face most times, more noticeable during summer.

    I will also take pictures of oral ulcers (non-painful) and photosentitivy skin rash as it happens. GP is also going to do further test during summer to test the photosentitivy of my skin.

    Marycain, your time and knowledge is so very much appreciated. Thanks again.

    Gerri

  2. #12
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    Taking the photos and organizing your medical records is a great idea - that way you will be prepared when you finally get in to see the rheumatologist. It's maddening that you can have a rash for days and as soon as you finally get a doctor's appointment, it disappears - kind of like the way the knocks and bumps in a car's engine never show up when the mechanic drives it.

    One night about Sjogrens and Crohns - both are considered autoimmune disorders. Although both can cause arthritic symptoms, they are not considered as part of the lupus criteria, because arthritis resulting from a known disease or injury does not satisfy the criteria.

    Let us know how things go with the neurosurgeon!

  3. #13
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    Marycain

    What is a non-erosive arthritis? Of all the sturff I have going on in my body I am surprised I don't have something. Is Rheumatory Arthritis the only one, or are the painful sores in my mouth part of non-erosive arthritis. I have never mentioned them to GP, maybe I should have.

    I see the neurosurgeon for the cyst @ my sacrum on Monday the 20th. Not many people get these type of cyst. I seem to like being unusual.

    Another question - Does thyroid problems have anything to do with Lupus? My thyroid is under active, I have gained so much weight. Over the past few years I also have had an increase to allergies of medication, food and environmental allergies, could this be Lupus related.

    Sorry for the many questions.

    Thanks for all your help.

    Hugs

    Gerri

  4. #14
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    Default Hi, Gerri

    Arthritis is a very confusing issue, and it can be even more complicated because what a doctor means by "arthritis" and what a lay person means can be very different. Literally, arthritis means inflammation of a joint. Practically, most people use the term generally to describe any condition that affects the joints.

    There are more than 100 different conditions that are grouped together as "arthritis and related rheumatic conditions" - so arthritis does not mean one specific disease - it can refer to any condition that causes pain, stiffness and swelling in the joints.

    The two most common forms of arthritis are osteoarthritis (also called degenerative joint disease) and Rheumatoid arthritis. Osteoarthritis often results from the wear and tear on the joints as we age, or from repetitive use or injury, or increased pressure on the joints from being overweight. It might be gradual in onset, and often affects the knees, hips, hands and spine - causing pain, tenderness, swelling and decreased function. Although it can occur at any age, it becomes increasingly more common as people age, and many people over 60 will have osteoarthritis in at least one joint.

    Rheumatoid Arthritis is an autoimmune disease in which the body's own immune system begins to attack the cell lining within the joints, called the synovium. RA can be disabling because it can cause rapid destruction of the joints. It often presents with pain and visible redness and swelling of the small joints, particularly the joints in the hands. Unlike OA, joints affected by RA may look visibly inflamed and feel hot to the touch. People with RA may also have systemic symptoms such as fever and fatigue, and involvement of organs other than the joints. Many people with RA have a positive RA or rheumatoid factor in blood tests, although this is not a definitive test for RA. RA is the most common cause of arthritis in children - this is referred to as juvenile rheumatoid arthritis or JRA. Because RA also involves a malfunction in the immune system, like lupus, many of the treatments and medications are the same.

    About 5% of people with psoriasis will develop a form of arthritis called psoriatic arthritis. The pattern of psoriatic arthritis is different from both lupus and RA, and it often causes distinctive changes in the fingernails, so it is not likely to be confused with either RA or lupus, although the treatments are often similar.

    Quick anatomy lesson here - "joints" are like the hinges of the body - they are the junction where two bones meet. Most joints are "mobile", allowing the bones to move. "Peripheral" means away from the center, so the "peripheral joints" are those in the extremities and attaching the extremities to the torso - hip, shoulder, knee, elbow, wrist, ankle, finger joints and toe joints are all "peripheral"joints. The joints in the spine are "axial" joints.

    Other anatomical terms used in discussing arthritis -

    cartilage - at the joint, the bones are covered with cartilage (a connective tissue), which is made up of cells and fibers and is wear-resistant. Cartilage helps reduce the friction of movement.

    synovial membrane - a tissue called the synovial membrane lines the joint and seals it into a joint capsule. The synovial membrane secretes synovial fluid (a clear, sticky fluid) around the joint to lubricate it. Inflammation of the synovial membrane is called synovitis.

    ligaments - strong ligaments (tough, elastic bands of connective tissue) surround the joint to give support and limit the joint's movement.

    tendons - tendons (another type of tough connective tissue) on each side of a joint attach to the muscles that control movement of the joint. The tendon is the bridge between the joint and the muscle. Inflammation of a tendon is very common and is called tendonitis.

    bursas - fluid-filled sacs, called bursas, between bones, ligaments, or other adjacent structures help cushion the friction in a joint. Inflammation of a bursa is called bursitis. Conditions like "housemaid's knee" are caused by bursitis.

    So, the arthritis criteria for lupus is non-erosive arthritis involving two or more peripheral joints. All this really means is inflammation attacking two or more of the joints listed above (knee, hip, shoulder, etc.) which does not destroy or erode the bone around the joints. Bone destruction is generally visible on x-ray. It is basically a way to distinguish between the arthritis of RA, which often does cause destruction of the surrounding bone, and the arthritis of lupus, which generally does not cause destruction of the bone. So the terms erosive and non-erosive refer to the degree of damage caused by the arthritis, not to the type of arthritis. I know this is a complicated explanation, but it is also a complicated subject.

    Crohns disease ( a type of inflammatory bowel disease) and Sjogren's syndrome are both considered a form of auto-immune disorder, most likely caused by a malfunction in the immune system. Although both can cause arthritis-like symptoms in some people, neither is specifically considered a form of arthritis. Bursitis and tendonitis affect the structures around the joints, so the pain can sometimes be mistaken for the joint pain of arthritis. However, none of these conditions would be considered specifically "arthritis" for the purpose of the lupus criteria.

    Thyroid disorder is very common in women. Often an underactive thyroid is caused by autoimmune thyroiditis, called Hasimoto's thyroiditis. Some women with lupus also have Hasimoto's, but it is also very common in women who don't have lupus. So only a doctor can really tell you if a thyroid problem is related to another disease.

    Hope this helps.

  5. #15
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    I think I finally getting this non-erosive arthritis. It is the inflamation that attacks the skin and joints causes them to swell, and not cause by any structural damage. I have had some of this only in my fingers, hip and knees.

    My knee swelled so much it was so tight in my loose pants. I thought I had somehow over worked the knee. When I went to the doctor whom I had at the time, and told her about the swelling (of course after the swelling had gone down), she did take x-rays and she said there was no damage there, and so she did not believe me about the swelling. (I don't remember now if it was hot to touch.)

    It also happened with my hips joints, it swelled but I remember it was also very hot to touch. I tried explaining this to the orteopedic surgeon who gave me a cortisone shot saying it was Bursitis. The shot did nothing to alleviate the pain.

    The finger swell off and on in the joints and never when I want to show a doctor.

    Gerri

    Marycain, it is so much easier trying to explain what is going on with me, and finally getting answers, that are helping me understand. I appreciate your time and energy.

  6. #16
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    I think most doctors are so rushed, you are in and out before you have any time to ask questions. And they are not always the best at answering questions because they assume we understand all the medical jargon. Hopefully asking questions here will help you organize the questions you need to ask your own doctor, so you get the most out of your appointment time.

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