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Thread: Newbie who is trying to deal with possible Lupus

  1. #1
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    Default Newbie who is trying to deal with possible Lupus

    Hi Everyone

    My name is Gerri. I am 52 years young, sometimes feel 90.

    Over this past year I have had many MRIs. On the brain MRIs they found Lesions on my brain. They suggested the possibility of MS. November '05 I couldn't move my legs and was in the hospital for 7 days. It was a month before I was able to move my legs again. MS was ruled out.

    Today I deal with a lot of medical issues, Central Auditory Processing Disorder (CAPD), Severe Obstructive Sleep Apnea (CPAP), Acid Reflux (GERDS), Narrowing Airway, Bronchial Asthma, Lung Damage (scar tissue), Diabetic/Controlled by diet, Psoriasis, Hepatitis A (had shot), Elevated Alkaline Phosphatase, Adrenal Gland (cyst 1.38 cm), Irritable Bowel Syndrome (IBS), Crohns sm intestine (controlled by diet), Osteopenia, Arthritis [Osteoarthritis Bursitis(Hips), Fibromyalgia, Rotator Cuff Tendinitis, Ankylosing Spondylitis (HLAB27+), Sjogrens], Carpal tunnel problems in my fingers on both hands, Leaky gut and (Enlarged spinal canal @ sacrum & 6.5 cm x 3 cm cyst).

    Now I being tested for Lupus. My ESR is 55 normal is 20. My ANA is still negative. I have many allergies, and also many drug related allergies. During Winter I have problems with cold fingers, very cold toes, and wear socks to bed. I seem to have a lot of bruises, and areas where blood clots seem to turn to bruises.

    Out of 11 points to be diagnosed with Lupus I have had 9, they are off and on again over time. You need a positive ANA test, and another test which I wasn't even given the test for, to be diagnosed with Lupus

    I have had problems with Central Sleep Apnea (minor). I have ongoing cognitive problems. I have weird headaches all the time, and something like a cold in my head. I am light senitive, and have been for many years at least back to 1992. I get rash across bridge of my nose, and a rash when out in the sun. I get flashing lights in my eyes all the time. I see distortions in stones that look like 3D. My Central Auditory Porcessing Disorder is getting a whole lot worse. I have major fatigue all the time. I told doctor of a possible seizure, she ignored me. They say I may have had TIAs last November which landed me in the hospital. I was diagnosed with some psycotic problem, because they didn't want to believe me when I told them about my Central Auditory Processing disorder (born with). I still have all over weakness.

    Can the cyst on my back cause all this? If I have Lupus will the symptoms decrease when the cyst is drained? No surgeon will remove the cyst as it is to close to spine and is to large, and it is like operating on tissue paper. I have had many of these symptoms for years, they are now getting progressively worse.

    Sorry for the long post. I suppect I have Lupus. A friend agrees, she also has lupus and has had it for 35 years.

    I will appreciate all comments.

    Hugs all

    Gerri
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  2. #2
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    Hi Gerri,
    Welcome to the forum. This is a nice forum with some really knowledgeable people. Marycain, Stjames, Saysusie are all real knowlegeable and one of them will be on shortly. I am 47 and have SLE which I have had almost all my life. You don't always have to have a positive ANA to have Lupus. Mine is pos, but it wasn't pos for years. I believe they go more by symptoms then just the ANA itself. It sounds like you have a lot of different things going on. Have you seen a Rheumatologist? Well I just want to welcome you to the forum.

    Hugs,
    Kathleen


    Live one day at a time: It's easier that way

    Dx with SLE in 1994
    Dx with Sjogrens 1994
    Dishydrotic Eczema 1974
    Severe Osteo-Arthritis

    Meds:
    Imuran 125mg
    Plaquenil 400mg
    Sulindac (Clinoril) 400mg
    Soma prn up to 4 times a day
    Darvacet prn

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    Default Hi, Gerri

    I'm sorry you are having such a difficult time with this. You didn't mention where you live in Canada, but are you anywhere close to a major teaching hospital or university hospital? It sounds like you need access to a group of specialists to get these problems sorted out.

    Do the doctors know specifically what type of cyst you have on your spine? There are several types of cysts - some are related to birth defects like spina bifida - others are related to inflammation or other problems. Dermoid cysts and arachnoid cysts are both a possibility in the lumbosacral area. Treatment options and prognosis would depend on the type of cyst involved. However, it is very unlikely that a cyst would cause all the symptoms you are describing - it would be more likely to put pressure on the nerves going downward, which might affect your legs and feet, or your bowel and bladder control. So it might be related to the temporary paralysis you experienced, but is less likely to be related to your other symptoms. But only a competent neurologist or neurosurgeon can really make this determination, so it's important to make sure you get the medical care you need.

    There are many conditions which can cause an elevated sed rate, including an improperly performed test, and some medications as well as a number of medical conditions. However, a higher sed rate is normal as we age, and the "normal" cutoff for a woman over 50 is 30 rather than 20, to account for age/gender related increases. So a sed rate of 50-55 in a woman over 50 is elevated, but not high enough to cause immediate concern. But it does indicate the need for more testing to find out what is causing the elevation. Do you know if your doctor has ordered additional lab work? A complete antibody panel test, a C-reactive protein, and serum complement levels would all be a good idea, since these tests are often abnormal in lupus.

    Without knowing which of the 11 potential diagnostic criteria you have experienced, it's difficult to really discuss how likely lupus is as a diagnosis. It is not accurate that you must have a positive ANA to be diagnosed - ANA-negative lupus is rare (less than 5% of all lupus patients) but it does exist. However, most patients with ANA-negative lupus will have other auto-antibodies which can be detected on a complete antibody subset panel. Most labs do an ANA screening test first, and if it is negative, no additional testing is done, so these other antibodies are never detected. This is why the ordering doctor has to specify which antibody subsets to include in the test. An ANA test can also be affected by medications, so if you were taking steroids for your asthma when the test was done, it might have affected the test results.

    The coldness in your hands and feet might be caused by Reynaud's phenomenon, which is very common in lupus. It can occur by itself (Reynaud's disease) or as a part of other autoimmune disorders like Sjogren's Syndrome. Because it is a common feature of many diseases, it is not one of the lupus criteria. But coldness in the hands and feet can also be caused by circulatory problems, heart conditions like athlerosclerosis or CHF, or vascular problems like peripheral artery disease. It can also be a side effect of some medications. So, again, this is a symptom you need to discuss with your doctor. Vascular studies or a cold-provocation test can help your doctor determine whether this is Reynaud's or some other condition.

    You actually have several conditions which could account for the elevated alkaline phosphatase level - a history of hepatatis, diabetes, and osteopenia could all account for the elevated ALP levels. These levels tend to go up and down, so they might be normal if tested again. But you should have complete liver function tests to rule out any problems.

    Are you on medications to control your Sjogren's syndrome? I ask because many people think Sjogren's just causes dry mouth and eyes, and don't realize that in some patients it can cause systemic symptoms much like lupus - including inflammation of the joints (arthritis), muscles (myositis), nerves (neuropathy), thyroid (thyroiditis), kidneys (nephritis), or other areas of the body. Another very common complication of Sjogren's is visual problems, including corneal scarring. So it would be a good idea to ask your doctor if your Sjogren's could be becoming more active. and causing some of these problems. You can get more information about Sjogrens Syndrome from the website www.sjogrens.org

    Your adrenal function should also be checked, because adrenal gland failure can lead to a condition called Addison's disease, which can be very serious. So this does need to be checked out. Fortunately Addison's disease is very treatable with replacement steroid hormones. Because of your history of an adrenal cyst, your doctors have probably checked your adrenal function, but if it has not been tested recently, you should ask to have this done. Adrenal gland failure can cause generalized weakness such as you are describing.

    With your complex medical history, it is unlikely that one disease, even lupus, accounts for all your symptoms. So you really need to be evaluated by a team of specialists working together. Please understand that none of us are doctors - all we can really do is give you some suggestions about where to go next, and the encouragement and support to keep pushing for a diagnosis! There are several members here from Canada, and hopefully they will have some insight on how to work the Canadian medical system to get the referrals and specialists you need.

    Again, welcome!

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    Hi Kathleen & Marycain

    Thank you for the welcome. I live in cottage country on the Shores of Lake Huron, in Ontario, and not anywhere close to a major teaching hospital.

    I have a hairline fracture on my L5 disk, which may have originated in 1992, after a freak stupid accident. I went to lift a 25 lbs box, to find it weighed a whole lot more than was posted. I heard a pop, and immediated sweat poured off my face. I had no further pain or problem until about 3 years ago. I am not sure what type of cyst it is. The spinal canal at the sacrum is enlarged. At this very area, immediate right of the spinal canal is this cyst, and left of the thecal sac. I see a neurosurgeon for this on the 20th of this month.

    My CRP rate was normal.

    The Eleven Criteria for the SLE Diagnosis From www.Lupus.org

    1. Malar rash - I have had this on many occasions, and will have to take pictures of it when it occurs next.

    2. Discoid rash - I have had raised patches of skin that are redder than rest skin on leg where this skin patches are. Again will have to take patches. These skin patches take a long time to go away, but settle to look like psoriasis. So not totally sure if Discoid rash. I have had a subacute cutaneous lupus associate with anti-Ro antibodies as seen in the picture (right hand side picture. (http://www.musc.edu/rheumatology/Stu...s/SLEGEN~1.PPT) I have always had very thick and long hair, and nearly two years ago I start losing hair in handfuls. Short time later I decided to have it cut short. My hair dresser says I have alapecia areas at the back of my head.

    3. Photosensitivity: I have been for years had a photosentitivity problem. Within a matter of minutes (less than 5) I have a rash on my arms, face, and any other open skin. I even start to sneeze.

    4. Oral Ulcers: I get many sores in my mouth, and pimple like sores around my the outside of my mouth.

    5. Arthritis: I have Rotator Cuff Tendinitis, Bursitis hips, Fibromyalgia and Osteopenia. They say nonerosive arthritis involving two or more peripheral joints.

    6. serositis pleuritis or pericarditis. I have scaring on my lungs which the doctor could not explain, and small amounts of fluid around my heart. I was told it was from some inflamation.

    7. Renal disorder. I have had sediment in my urine, and unexplain protein, and doctor did not go any further to check it out.

    8. Neurologic disorder. (Central auditory processing problems (all my life), no sense of smell, balance problems, always watching where I walk so I know where to put my feet (at times stones visually seem higher from one to another), have stars in my eyes), have mentioned in past that I thought had possible seizure, also diagnosed with Fibromyalgia). I was diagnosed with a “conversion disorder because of the unexplained stress related paralysis. (Urologist) states urinary problems neurological in origin. I have a number Lesions on the brain as stated in MRI reports.

    9. Hematologic disorder: Unable to give blood ever again as my body doesn’t rebuild iron (I was 21 at the time. After giving blood, a month later my iron had fallen to 5. It was a month after receiving a shot, and iron supplement, that my iron was up to normal again. Test today are showing trace Leukcytes.

    10: Antinuclear antibody: This test was negative - I had bronchial asthma at the time and was indeed using steriods to help keep my airway open.

    11: Immunologic disorder: Did not have this test.


    I have a very mild fatty liver. I am hepatatis B & C negative. My diabetes is controlled by diet. My Alkaline Phosphatase level has been high for years.

    As I have many allergies to medication my GP refuses even to think about putting me on any medication. He is leaving all my arthritis related problem for my Rheumy to deal with and that won't be until about May '07.

    My doctor refused to thing that I may have adrenal gland failure because he says I am showing no signs of any problems. I suspect I do have adrenal gland fatigue. A friend has suggested having a saliva test done. I am not sure if this indeed would be factual at diagnosing an adrenal gland problem.

    Marycain & Kathleen, I very much appreciate the information you have provided.

    Hugs

    Gerri

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    Hi Gerri,
    I am wondering why you have to wait until May 07 to see a Rheumatologist? You seem to have most of the symptoms for Lupus. I think that the saliva test that they want to do is to test for Sjogrens. Why can't you see a Rhematologist sooner? I hope that the doctors can get this all sorted out and figure out what is happening with you.

    Hugs,
    Kathleen
    Live one day at a time: It's easier that way

    Dx with SLE in 1994
    Dx with Sjogrens 1994
    Dishydrotic Eczema 1974
    Severe Osteo-Arthritis

    Meds:
    Imuran 125mg
    Plaquenil 400mg
    Sulindac (Clinoril) 400mg
    Soma prn up to 4 times a day
    Darvacet prn

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    Kathleen, Gerri lives In Canada, which has a National Health Service, not a private health care system as we do in the US. So long delays to get into a specialist or to have elective surgery are not unusual.

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    Oops I missed the fact that you are in Canada, Geri. I guess the brainfog done kicked in here. I see that your medical availability is different then from us in the US.

    Hugs,
    Kathleen
    Live one day at a time: It's easier that way

    Dx with SLE in 1994
    Dx with Sjogrens 1994
    Dishydrotic Eczema 1974
    Severe Osteo-Arthritis

    Meds:
    Imuran 125mg
    Plaquenil 400mg
    Sulindac (Clinoril) 400mg
    Soma prn up to 4 times a day
    Darvacet prn

  8. #8
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    Kathleen & Marycain

    A friend said if I am willing to travel over 3 hours I can possibly get into seeing a Rheumy within the next three months. I would have to travel to Toronto. I haven't driven in Toronto, and don't know the city at all.

    I am looking into whether the local red cross can provide transportation. If they can then I will have my GP make the referral.

    Hugs

    Gerri

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    I'm not that familiar with Ontario, but are you close enough to Michigan (US) that you could see a rheumatologist there? I know it would mean paying out of pocket, but it might enable you to see someone sooner.

    Have you checked with the Ontario chapter of Lupus Canada to see what services they can provide? You can get contact information from their website at www.lupusontario.org - they might be able to help you arrange transportation.

  10. #10
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    Default Gerri - re ACR criteria

    Gerri, I had meant to respond to your post about the ACR criteria for the classification of lupus, but got sidetracked and forgot. Sorry! Anyway, it is important to remember that although we refer to these as diagnostic criteria, they were originally intended for classification purposes only, as a way to group similar patients together for purposes or research or clinical trials. They were not intended to be hard-and-fast guidelines for diagnosing lupus, although many doctors treat them that way.
    There are 11 separate criteria - when four or more are present, the patient is considered to have lupus. The criteria do not all have to be present at the same time to be considered.

    Criterion

    !) Malar Rash. The "butterfly rash" is present in about 50% - 75% of lupus patients. It is a red, usually raised, rash over the cheeks and the bridge of the nose, but not affecting the folds of the nose. In some people it is more like a flush. Other conditions including rosacea can cause a similar rash, so a biopsy may be needed to confirm the rash is lupus related.

    2) Discoid Rash. These are red, raised patches, usually coin shaped, that may leave scars. The lesions often have a scaly, "warty" appearance, They generally affect the face, scalp and ears, the arms, back and chest, and are less likely to involve the legs. So lesions present on the legs only are probably not discoid, but only a doctor can tell for sure.

    3) Photosensitivity. Reaction to sunlight,resulting in the development of or increase in skin rash

    4) Oral Ulcers. Ulcers affecting the mucosal layers of the mouth or nose, usually painless, observed by a physician.

    5) Arthritis. Nonerosive arthritis involving two or more peripheral joints (arthritis in which the bones around the joints do not become destroyed). Tendonitis, bursitis, and other rheumatic syndromes are considered soft-tissue syndromes. They are not arthritis because they do not involve the joint itself, so they would not be considered part of the criteria for lupus. Fibromyalgia is also considered a soft-tissue syndrome. Osteopenia is an abnormal loss of bone. Neither of these conditions is considered "arthrtis" although they may cause arthritis like pain.

    6) Serositis. Pleuritis or pericarditis (inflammation of the lining of the lung or heart). This can be documented by a convincing patient history, or by evidence on physical examination of either a pleural rub or a pericardial effusion.

    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 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.

    8) Neurologic Disorder. The only two neurological problems considered specific for lupus are seizures (convulsions) AND/OR psychosis in the absence of drugs or metabolic disturbances which are known to cause such effects. Cognitive dysfunction, ataxia, loss of coordination, or other neurologic problems are not specific to lupus and do not satisfy the criteria. The seizure and /or psychosis must be observed or documented in the patient's medical records.

    9) Hematologic Disorder. There are four blood disorders which satisfy this criteria. Autoimmune hemolytic anemia (destruction of red blood cells caused by abnormal immune response) 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. The only form of anemia whih satisfies the criteria is hemolytic anemia - iron deficiency or other forms of anemia are not included.

    10) Antinuclear Antibody. Positive test for antinuclear antibodies (ANA) in the absence of drugs known to induce it.

    11) Immunologic Disorder. There are four immunologic disorders (all are detectable through blood testing) which satisfy the last criteria - Positive anti-double stranded anti-DNA test OR positive anti-Sm test OR positive antiphospholipid antibody such as anticardiolipin or lupus anticoagulant OR false positive syphilis test (VDRL).

    Hope this helps!

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