CraigR

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Posts posted by CraigR


  1. Seasonal distribution of systemic lupus erythematosus (SLE) activity and its correlation with climate factors. The disease activity of patients with SLE is affected by seasons and climate factors. Yang J. (UnBound) Rheumatol Int. 2011 Jun 11. (Also see: Systemic Lupus Erythematosus)

     

    This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.

     

    Craig Roothoff

    ISN Assistant News Guide

    International Scleroderma Network(ISN)


  2. Fibromyalgia (FM) Criteria and Severity Scales for Clinical and Epidemiological Studies: A Modification of the ACR Preliminary Diagnostic Criteria for Fibromyalgia. The criteria are simple to use and administer, but they are not to be used for self-diagnosis. The FM Symptom scale may have wide utility beyond the bounds of FM, including substitution for widespread pain in epidemiological studies. Frederick Wolfe. The Journal of Rheumatology vol. 38 no. 6 1113-1122. (Also see: Fibromyalgia)

     

     

    This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.

     

    Craig Roothoff

    ISN Assistant News Guide

    International Scleroderma Network(ISN)


  3. Cutting edge assessment of the impact of autoimmunity on female reproductive success. Autoimmune effects on female reproductive success deserve recognition. Further investigations must not ignore patient stratification, based on ovarian FMR1 genotypes. Genetic definition of high-risk patients should lead to development of successful therapeutic interventions. Gleicher N. (UnBound) J Autoimmun. 2011 Jun 8. (Also see: Pregnancy and Autoimmunity)

     

    This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.

     

    Craig Roothoff

    ISN Assistant News Guide

    International Scleroderma Network(ISN)


  4. Do We Need Core Sets of Fibromyalgia (FM) Domains? The Assessment of Fibromyalgia (and Other Rheumatic Disorders) in Clinical Practice. The content and impact of FM, whether measured by discrete variables or a fibromyalgianess scale, seems to be independent of diagnosis. These data argue for a common set of variables rather than disease-specific variables. Frederick Wolfe. The Journal of Rheumatology vol. 38 no. 6 1104-1112. (Also see: Fibromyalgia)

     

    This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.

     

    Craig Roothoff

    ISN Assistant News Guide

    International Scleroderma Network(ISN)


  5. Hi Gizelle,

     

    I have myositis attacks secondary to sclero. Muscles become very painful and fatigue gets sort of overwhelming. Can make breathing uncomfortable when it "travels" to the chest area. Usually follows physical stress, but sometimes comes on for no apparent reason. Typically lasts about 4 - 7 days.

     

    Unlike fibromyalgia (and panic attacks), these attacks show up on inflammation tests (ESR [sed rate], C-reactive protein). If these tests are positive, there's some sort of inflammation process going on. I find that keeping track of these tests is very helpful.

     

    Good luck,

     

    Craig


  6. Parents' perception of self-advocacy of children with myositis: an anonymous online survey. We identified deficiencies in the health care experiences of families as pertain to knowledge, self-advocacy, policy, and vocational readiness. Moreover, as children with complex medical issues grow up, parents attribute less self-advocacy to their children's level of independence. James D Katz. Pediatric Rheumatology 2011, 9:10. (Also see: Myositis)

     

    This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.

     

    Craig Roothoff

    ISN Assistant News Guide

    International Scleroderma Network(ISN)


  7. Unusual Clinical and Pathological Features in Pemphigus Vulgaris: A Potential Diagnostic Pitfall. considering that the observation we made may be seen in many patients affected by pemphigus vulgaris, such patients would benefit more from the therapy for pemphigus vulgaris instead of a biopsy. This would save the patient the pain of the biopsy and also the lack of necessity for it. (Hindawi) Case Reports in Medicine Volume 2011 (2011), Article ID 518758. (Also see: Pemphigus Vulgaris)

     

    This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.

     

    Craig Roothoff

    ISN Assistant News Guide

    International Scleroderma Network(ISN)


  8. Anti-centromere antibody-seropositive Sjögren's syndrome (SS) differs from conventional subgroup in clinical and pathological study. Low cellular infiltration but with an increase in fibrous tissues may explain the clinical feature of a high prevalence of Raynaud's phenomenon (RP) and normal IgG concentration in ACA+ primary SS. Hideki Nakamura. BMC Musculoskelet Disord. 2010; 11: 140. (Also see: Sjögren's)

     

    This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.

     

    Craig Roothoff

    ISN Assistant News Guide

    International Scleroderma Network(ISN)


  9. High Levels of Anti-Cyclic Citrullinated Peptide Autoantibodies Are Associated with Co-occurrence of Pulmonary Diseases with Rheumatoid Arthritis (RA). High anti-CCP2 levels are associated with lung disease in the RA population. Fleur Aubart. The Journal of Rheumatology vol. 38 no. 6 979-982. (Also see: Causes of RA and RA Complications)

     

    This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.

     

    Craig Roothoff

    ISN Assistant News Guide

    International Scleroderma Network(ISN)


  10. One other thought might be an anti-anxiety drug, if the idea of the surgery bothers you even when anesthetized.

     

    I mention this because I have had several bronchioscopies, where they put tubes down your nose while conscious. When it was first described, my attitude was "I don't think so!", but with the anti-anxiety drug, it didn't bother me at all. Even though awake, I was too dopey to be bothered.

     

    Craig


  11. Cognitive Dysfunction (CD) in Patients with Systemic Lupus Erythematosus (SLE): A Controlled Study. We found no differences in cognitive function between patients with SLE and RA (Rheumatoid Arthritis), suggesting that the CD found in some patients with SLE may represent the consequences of a chronic and/or inflammatory disease rather than SLE-related central nervous system damage. The Journal of Rheumatology vol. 38 no. 6 1020-1025. (Also see: SLE)

     

    This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.

     

    Craig Roothoff

    ISN Assistant News Guide

    International Scleroderma Network(ISN)


  12. I've had surgery for calcinoses on the fingers.

    I can't imagine thst they would even consider doing it without anesthesia. That would be monstrous.

     

    Mine were done by a family practice physician (not even a surgeon or rheumatologist). He anesthetized the finger with lidocaine injection, then cut it out with an instrument with a tiny scissors-like jaw. Nothing more than an extended regular doctor visit. Most dental work is much more complicated, and doesn't require a separate anesthesiologist! Why an anesthesiologist? The doctor can't give a couple of lidocaine injections, like dentists (and many non-anesthesiologist doctors) do all the time?

     

    In my case, the surgery did not completely eradicate the calcinoses, but removed most of it. Most importantly, it removed all of the pain.

     

    I'm astonished that these doctors make such a big, expensive deal out of something that is simpler than filling a cavity, or suturing a small wound.

     

    Just my 2 cents. Good luck,

     

    Craig


  13. Pulmonary thromboembolism as the initial manifestation in a child with antiphospholipid syndrome in the emergency department. Antiphospholipid syndrome (APS) should also be kept as a possibility in children presenting for the first time with pulmonary thromboembolism in the emergency department. Bhat MA. Pediatr Emerg Care. 2011 Mar;27(3):205-7. (Also see: APS)

     

    This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.

     

    Craig Roothoff

    ISN Assistant News Guide

    International Scleroderma Network(ISN)


  14. Here is a link for Mixed Connective Tissue Disease: Mixed Connective Tissue Disease

     

    Many, if not most us, have a mix of autoimmune disorders. My rheumatologist uses the word "Mosaic" - each patient seems to have a unique mosaic of illness. For instance, I have slow-onset (CREST) scleroderma, Sjogrens Syndrome, pulmonary hypertension, myositis - but oddly, without any esphogeal symptoms. Raynauds is sometimes a symptom of scleroderma or autoimmune disease.

     

    Since treatment is directed toward specific symptoms (since there is no cure), that is usually most important. For instance, if finger ulcers are a problem, increased circulation is desirable. Inflammation may require anti-inflammatories. These issues need to be worked out with your doctor.

     

    Regarding your tests - unfortunately, this disease relies heavily on symptoms for diagnosis. Tests suggest possible areas of trouble, but unfortunately you may just have to wait and see how it goes. Your normal Sed rate indicates that there is no inflammation going on (at the time of the test. Another good test for inflammation is C Reactive Protein.

     

    I have experience with the joint/muscle issue. I had an x-ray at a time of great pain, with no sign of joint disease. Since then, it has become quite obvious that the problem is muscular. This because it travels, and can effect such areas as the diaphram, with obvious "myalgia" or "myositis" (inflammation of muscle). Your description of feeling like you've been beat up is very apt! I feel the same way, or might also describe it as like muscles that have been seriously overworked to great pain. Steroid medication is the only help for a serious attack, though I prefer to minimize the use of it because of potential bad side effects.

     

    Unfortunately, too many of us seem stuck in limbo at times. Hopefully you can get some relief from symptoms.

     

    Good luck,

     

    Craig


  15. Systemic Lupus (SLE) and Risk of Restless Legs Syndrome (RLS). These novel data indicate that RLS is more prevalent in women with SLE than in controls. Although obesity was a significant risk factor for RLS in our sample, the predictive covariates examined were limited. The Journal of Rheumatology vol. 38 no. 5 874-876. (Also see: SLE and RLS)

     

     

    This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.

     

    Craig Roothoff

    ISN Assistant News Guide

    International Scleroderma Network(ISN)


  16. The Accuracy of Administrative Data Diagnoses of Systemic Autoimmune Rheumatic Diseases. Although health administrative data may be a valid resource, there are potential problems regarding the specificity and sensitivity of case definitions, which should be kept in mind for future studies. Sasha Bernatsky. The Journal of Rheumatology. May 01, 2011. (Also see: Rheumatic Diseases)

     

    This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.

     

    Craig Roothoff

    ISN Assistant News Guide

    International Scleroderma Network(ISN)


  17. The lifetime risk of adult-onset rheumatoid arthritis and other inflammatory autoimmune rheumatic diseases. One in 12 women and 1 in 20 men will develop an inflammatory autoimmune rheumatic disease during their lifetime. These results can serve as useful guides in counseling patients regarding their lifetime risk of these conditions and have important implications regarding disease awareness campaigns. Crowson CS. Arthritis rheumatologist. 2011 Mar;63(3):633-9. (Also see: Rheumatoid Arthritis)

     

    This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.

     

    Craig Roothoff

    ISN Assistant News Guide

    International Scleroderma Network(ISN)


  18. My first symptom was 34 years ago - Raynauds with some ulceration. My father had it more than thirty years before being diagnosed. Was diagnosed when he developed kidney failure and lung fibrosis. As a child we were told that my father had cold hands because he smoked, and heartburn after eating because of a hiatal hernia. This is very slow-onset scleroderma. I developed secondary Sjogren's about 12 years ago, then myositis and pulmonary hypertension a few years later.

     

    Last year we lost someone in our group who was 93 years old, and had originally been diagnosed in 1962.

     

    Craig


  19. Silicone breast implants and connective tissue disease: no association. Any claims that remain regarding an association between cosmetic breast implants and CTDs are not supported by the scientific literature but rather are a residual byproduct of the unprecedented large-scale product liability litigation in the USA. Lipworth L. Semin Immunopathol. 2011 Jan 10. (Also see: Causes of Scleroderma: Artificial Joints and Breast Implants and Connective Tissue Disease)

     

    This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.

     

    Craig Roothoff

    ISN Assistant News Guide

    International Scleroderma Network(ISN)


  20. Oral inflammatory process and general health. Part 1: The focal infection and the oral inflammatory lesion. The authors describe the current pathogenic concepts like the “immuno-allergic theory” and the formation of auto-antibodies in human body, contributing to the genesis of autoimmune illnesses sustained by individual reactivity linked to eredo-constitutionality. Somma F. Eur Rev Med Pharmacol Sci. 2010 Dec;14(12):1085-95. (Also see: Causes of Autoimmunity)

     

    This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.

     

    Craig Roothoff

    ISN Assistant News Guide

    International Scleroderma Network(ISN)


  21. Klinefelter's syndrome (47,XXY) among men with systemic lupus erythematosus (SLE). 47,XXY (Klinefelter's syndrome) is found in excess among men with SLE. Men commonly have SLE that is more severe than that found among women, but the 47,XXY men had less severe SLE than other men. Dillon S. (PubMed) Acta Paediatr. 2011 Mar 7. (Also see: SLE)

     

    This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.

     

    Craig Roothoff

    ISN Assistant News Guide

    International Scleroderma Network(ISN)


  22. Hi Christine,

     

    I'm the original poster to the thread mentioned by Jo.

     

    The way I understand it, you are trying to purchase private long-term disability insurance and being turned down. It appears they are turning you down due to being to high a risk. Not unlike trying to purchase medical insurance with failing health.

     

    I was lucky enough to have had long-term disability insurance through my employer, with optional increased coverage, for many years. Like group medical plans, all employees are covered regardless of pre-existing conditions (generally). I was immediately approved and receive payments from them upon becoming disabled.

     

    Social Security disablity is available, but is very difficult to get, despite specific statute law regarding scleroderma and many other diseases. A lawyer and a hearing before a judge are the only solution. I'm waiting for this.

     

    The main reason (in my case) for SS disability is that it makes you eligible for medicare, which is the only way to acquire medical care at a reasonable cost with pre-existing conditions. Also, the private disabilty insurers require that you exploit all possible sources of income before they make up the difference up to the insured amount.

     

    Your course would appear to be to try more insurance companies - but if you find one, the premiums might be unreasonably high. If your employer offers such insurance, you may be able to qualify for a group policy.

     

    Good luck,

     

    Craig