Guest guest Posted January 13, 2004 Report Share Posted January 13, 2004 Hi , Amy, & Dave, The following isn't the information that I read, just can't remember when it was (seriously!!) and in the meantime my computer went down so I'm not sure if I'll refind it, but the following is on a similar theme. According to the IgA Nephropathy Support Network run by Dale Hellegars, in her booklet for patients it lists amongst many symptoms: 1. Blurred vision 2. Transient episodes of memory loss and reduced ability to process information. I also have a book on Lupus, which is incredibly informative as there are many parallels with IgA, even though a slightly different autoimmune disease. Author J Wallace MD. " The Lupus Book A Guide for Patients and Their Families " . In the chapter 'Heady Connections: The Nervous System and Behavioural Changes' it talks about very similar symptoms for Lupus patients. Quote: " When my patients tell me they feel as though their brains had been fried, I have to know what is going on to help them " ............behavioural changes in lupus are the most misunderstood and mismanaged aspects of the disease. " In a table he lists the major neurological manifestations of lupus and cognitive disfunction/not thinking clearly is top, followed by headaches. Visual changes are there too. Also in this chapter he goes onto say that Fibromyalgia is a syndrome, cause unknown, that can run along with lupus, and in fact over 6million Americans suffer from it, in itself. Patients symptoms/complaints: decreased ability to concentrate, similar to that in Chronic Fatigue Syndrome, lack of stamina, and pain in muscles, characterised by at least 11 of 18 specific tender points throughout the body and increased pain throughout the soft tissues. Lupus is now more widely known about and is diagnosed not just on blood/biopsy tests but from a list of 11 other symptoms including fatigue, arthralgia, blurred vision etc, and the Docs are ready to accept these as Lupus symptoms whilst not knowing or explaining the cause. Our disease is and symptoms are at the early stages of recognition, and I believe eventually like Lupus, some of these non specific symptoms will be accepted. Lupus patients are still having to fight their corner re symptoms which for years they've all complained about and have been rejected by the Docs......heard that before? We are just at the beginning of that fight compared with them but hopefully we'll get a similar outcome of recognition. From the following extract referring to HSP (the systemic illness of IgA), which many of us are not diagnosed with but nevertheless seem to have similar systemic symptoms, it refers to circulating antibodies being deposited in different parts of the body. This is exactly what is happening in Lupus too, although they usually have other types of antibody as well as IgA. Is Henoch-Schonlein Purpura the Systemic Form of IgA Nephropathy? F. Bryson Waldo MD. (From the Dept of Pediatrics.The Children's Hospital. The University of Alabama at Birmingham. American Journal of Kidney Diseases Vol.X1I,NO 5 (November), 1988: pp 373-377 373 (c. 1988 by the National Kidney Foundation, Inc.) INDEX WORDS: IgA nephropathy, , Henech-Schonlein purpura, nephritis; pathegenesis. Quote: " In patients with HSP, immune complexes containing lgA and C3 are not only deposited in the kidney but also in blood vessels of the gut, joints, and skin. Immunotluorescence staining of purpuric and normal skin in patients with HSP reveals perivascular deposits of lgA. Although most patients with lgAN have no rash, many have perivascular deposits of lgA in clinically normal skin. This dermatologic finding suggests that the absence of purpura in patients with lgAN may represent a quantitative rather than qualitative difference in inununopathology. " Sorry to be so verbose! Sally UK. PS. Thanks for your mail, great news to hear you're feeling better. I've had a kidney infection and major fatigue last 10 days but today feel much brighter and I'm actually going out of the house to see the world again! Hurray. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2004 Report Share Posted January 13, 2004 Sally I'm happy you were verbose! Thanks for all the info it gives me something to think about and has helped me form some new questions for my neph. Amy RE: Mental function? Hi , Amy, & Dave, The following isn't the information that I read, just can't remember when it was (seriously!!) and in the meantime my computer went down so I'm not sure if I'll refind it, but the following is on a similar theme. According to the IgA Nephropathy Support Network run by Dale Hellegars, in her booklet for patients it lists amongst many symptoms: 1. Blurred vision 2. Transient episodes of memory loss and reduced ability to process information. I also have a book on Lupus, which is incredibly informative as there are many parallels with IgA, even though a slightly different autoimmune disease. Author J Wallace MD. " The Lupus Book A Guide for Patients and Their Families " . In the chapter 'Heady Connections: The Nervous System and Behavioural Changes' it talks about very similar symptoms for Lupus patients. Quote: " When my patients tell me they feel as though their brains had been fried, I have to know what is going on to help them " ............behavioural changes in lupus are the most misunderstood and mismanaged aspects of the disease. " In a table he lists the major neurological manifestations of lupus and cognitive disfunction/not thinking clearly is top, followed by headaches. Visual changes are there too. Also in this chapter he goes onto say that Fibromyalgia is a syndrome, cause unknown, that can run along with lupus, and in fact over 6million Americans suffer from it, in itself. Patients symptoms/complaints: decreased ability to concentrate, similar to that in Chronic Fatigue Syndrome, lack of stamina, and pain in muscles, characterised by at least 11 of 18 specific tender points throughout the body and increased pain throughout the soft tissues. Lupus is now more widely known about and is diagnosed not just on blood/biopsy tests but from a list of 11 other symptoms including fatigue, arthralgia, blurred vision etc, and the Docs are ready to accept these as Lupus symptoms whilst not knowing or explaining the cause. Our disease is and symptoms are at the early stages of recognition, and I believe eventually like Lupus, some of these non specific symptoms will be accepted. Lupus patients are still having to fight their corner re symptoms which for years they've all complained about and have been rejected by the Docs......heard that before? We are just at the beginning of that fight compared with them but hopefully we'll get a similar outcome of recognition. >From the following extract referring to HSP (the systemic illness of IgA), which many of us are not diagnosed with but nevertheless seem to have similar systemic symptoms, it refers to circulating antibodies being deposited in different parts of the body. This is exactly what is happening in Lupus too, although they usually have other types of antibody as well as IgA. Is Henoch-Schonlein Purpura the Systemic Form of IgA Nephropathy? F. Bryson Waldo MD. (From the Dept of Pediatrics.The Children's Hospital. The University of Alabama at Birmingham. American Journal of Kidney Diseases Vol.X1I,NO 5 (November), 1988: pp 373-377 373 (c. 1988 by the National Kidney Foundation, Inc.) INDEX WORDS: IgA nephropathy, , Henech-Schonlein purpura, nephritis; pathegenesis. Quote: " In patients with HSP, immune complexes containing lgA and C3 are not only deposited in the kidney but also in blood vessels of the gut, joints, and skin. Immunotluorescence staining of purpuric and normal skin in patients with HSP reveals perivascular deposits of lgA. Although most patients with lgAN have no rash, many have perivascular deposits of lgA in clinically normal skin. This dermatologic finding suggests that the absence of purpura in patients with lgAN may represent a quantitative rather than qualitative difference in inununopathology. " Sorry to be so verbose! Sally UK. PS. Thanks for your mail, great news to hear you're feeling better. I've had a kidney infection and major fatigue last 10 days but today feel much brighter and I'm actually going out of the house to see the world again! Hurray. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2004 Report Share Posted January 14, 2004 That's OK Amy, please keep us informed if you make any headway. Sally UK. Re: Mental function? Sally I'm happy you were verbose! Thanks for all the info it gives me something to think about and has helped me form some new questions for my neph. Amy RE: Mental function? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2004 Report Share Posted January 16, 2004 Thanks for that Sally, very interesting ) RE: Mental function? Hi , Amy, & Dave, The following isn't the information that I read, just can't remember when it was (seriously!!) and in the meantime my computer went down so I'm not sure if I'll refind it, but the following is on a similar theme. ---------- Outgoing mail is certified Virus Free. Checked by AVG Anti-Virus (http://www.grisoft.com). Version: 7.0.211 / Virus Database: 261.7.0 - Release Date: 16/01/2004 Quote Link to comment Share on other sites More sharing options...
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