Guest guest Posted April 19, 2006 Report Share Posted April 19, 2006 Hi Dorothy, I dont know much about cryo's but Im sure Liz will come alone and be able to give you info on that.. I guess its fairly common with Hep C altho Im lucky I guess, I dont have that.. good luck jaxDorothy <dorv@...> wrote: Just got word that my cryoglobulemia (sp?) test came back positive. Thiswas the second one I had. The first was negative. Evidently, this is whatis causing my neuropathy issue in my right leg.I'd like to know if anyone has experienced the same problem. Myunderstanding is all I can do is treat the HCV.My neuropathy has been improving and I had thought I was "off the hook"since the first cryo was negative. The second one was done at ColumbiaUniversity so I believe it was done correctly with true results.Thanks for any info.Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2006 Report Share Posted April 19, 2006 Actually, I understand it's rare.........my luck -----Original Message-----From: Hepatitis C [mailto:Hepatitis C ]On Behalf Of Jackie onSent: Wednesday, April 19, 2006 1:08 PMHepatitis C Subject: Re: Croglobulemia Hi Dorothy, I dont know much about cryo's but Im sure Liz will come alone and be able to give you info on that.. I guess its fairly common with Hep C altho Im lucky I guess, I dont have that.. good luck jax Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2006 Report Share Posted April 19, 2006 I know alot of people with cryo , it is related to their hep c . What is Cryoglobulinemia? From the Mayo Health Oasis Library Resources: "The term cryoglobulinemia indicates the presence of cryoglobulins in the blood. These are abnormal forms of protein molecules that precipitate at cold temperatures and redissolve at normal body temperature. Hence, when a person with cryoglobulinemia is exposed to cold, he or she may experience impaired circulation in the small blood vessels. This may lead to color changes in the skin, hives, damage to the extremities, bleeding into the skin (purpura), and other problems. The underlying cause of this very rare condition may include diseases of the immune system [e.g. Waldstrom's macroglobulinemia], of certain cells in the bone marrow [e.g. monoclonal gammopathy of undetermined significance (MGUS) or its malignant form, multiple myeloma], and some infectious diseases [e.g. hepatitis C virus]. The diagnosis depends on demonstrating the presence of cryoglobulins in the blood and searching for a possible underlying cause." Croglobulemia Just got word that my cryoglobulemia (sp?) test came back positive. Thiswas the second one I had. The first was negative. Evidently, this is whatis causing my neuropathy issue in my right leg.I'd like to know if anyone has experienced the same problem. Myunderstanding is all I can do is treat the HCV.My neuropathy has been improving and I had thought I was "off the hook"since the first cryo was negative. The second one was done at ColumbiaUniversity so I believe it was done correctly with true results.Thanks for any info. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2006 Report Share Posted April 19, 2006 References on Hepatitis C associated cryoglobulinemia (Kindly provided by a respondent to the Cryoglobulinemia Home Page) "Hepatitis C Virus Infection and Mixed Cryoglobulinemia" Latriki 1997, 71(2):123–133. DOURAKIS SP, BOKI KA. http://www.mednet.gr/beta/abstract.htm Hepatitis C virus (HCV) is involved in an increasing number of non-hepatic diseases. Mixed cryoglobulinemia (MC) is considered a lymphoproliferative disorder. It is characterized by arthralgias, weakness, purpura and organ involvement such as membranoproliferative glomerulonephritis, peripheral neuropathy, vasculitis and chronic liver diseases. The term essential mixed cryoglobulinemia (EMC) has been used to describe the syndrome with no evidence of underlying disease. Chronic HCV infection is the main cause (90%) of EMC type II and III with or without clinical or biochemical evidence of liver damage. Anti-HCV antibodies, HCV proteins and HCV-RNA have been found in the cryoprecipitate in concentrated form. Several HCV genotypes are involved in the pathogenesis of the disease. Cryoglobulinemia is quite frequent in chronic HCV infection and, when appropriate, techniques of cryoglobulin detection are applied. Its frequency is usually higher than 40%, with a mean cryocrit of approximately 2–5%. Patients with chronic HCV infection and EMC are more frequently females, cirrhotics and have a longer duration of HCV infection. Only a minority (approximately 10%) is associated with clinical MC disease. HCV, as a lymphotropic virus, may play a direct role in the development of low-grade non-Hodgkin's lymphomas usually associated with EMC. Approximately 50% of patients with hepatitis C associated MC appear to respond to interferon-alfa, 3–5 MU given three times weekly, for 12–18 months. A rebound phenomenon of clinical and serologic parameters is frequently observed after therapy discontinuation. HCV is also associated with membranoproliferative glomerulonephritis, with or without cryoglobulinemia, or with membranous glomerulonephritis, related to deposition of immune complexes within the glomeruli. In conclusion, EMC associated with chronic HCV infection should no longer be referred to as "essential" but rather as hepatitis C associated MC. Every patient with chronic HCV infection may have MC. HCV is added in the list of viruses causing glomerulonephritis. Key words: Hepatitis C virus, cryoglobulinemia, interferon-á, glomerulonephritis, non-Hodgkin's lymphoma. RE: Croglobulemia Actually, I understand it's rare.........my luck -----Original Message-----From: Hepatitis C [mailto:Hepatitis C ]On Behalf Of Jackie onSent: Wednesday, April 19, 2006 1:08 PMHepatitis C Subject: Re: Croglobulemia Hi Dorothy, I dont know much about cryo's but Im sure Liz will come alone and be able to give you info on that.. I guess its fairly common with Hep C altho Im lucky I guess, I dont have that.. good luck jax Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2006 Report Share Posted April 20, 2006 , how have your friends handled the cryo? Have they recovered if they suffered from neuropathy with treatment? What other problems have they had due to it? I know........I have lots of questions! I appreciate whatever info you can give me. I'm seeing a top liver specialist in 2 weeks. I'm very apprehensive about it as I've put off dealing with the HCV for a long time. As I told one doctor, I kind of knew that it might kill me one day, but I had no idea that it could cripple me first. Had I known, I would have treated the HCV before this happened. Also - I have had the blood test twice for cryo. The first test was negative so I thought I was off the hook. However, when I see a top neurologist at Columbia University a few weeks ago, he repeated it and that one was positive. The test is extremely sensitive and requires the blood to be handled under very careful temperatures. I asked him if perhaps HIS test might be wrong. He said he doubted it as false positives were rare. My husband also has HCV so we're both going to explore treatment. He's also ignored it, but has been lucky so far as it hasn't manifested itself in anything other than high liver enzymes. -----Original Message-----From: Hepatitis C [mailto:Hepatitis C ]On Behalf Of elizabethnv1Sent: Wednesday, April 19, 2006 10:18 PMHepatitis C Subject: Re: Croglobulemia I know alot of people with cryo , it is related to their hep c . What is Cryoglobulinemia? From the Mayo Health Oasis Library Resources: "The term cryoglobulinemia indicates the presence of cryoglobulins in the blood. These are abnormal forms of protein molecules that precipitate at cold temperatures and redissolve at normal body temperature. Hence, when a person with cryoglobulinemia is exposed to cold, he or she may experience impaired circulation in the small blood vessels. This may lead to color changes in the skin, hives, damage to the extremities, bleeding into the skin (purpura), and other problems. The underlying cause of this very rare condition may include diseases of the immune system [e.g. Waldstrom's macroglobulinemia], of certain cells in the bone marrow [e.g. monoclonal gammopathy of undetermined significance (MGUS) or its malignant form, multiple myeloma], and some infectious diseases [e.g. hepatitis C virus]. The diagnosis depends on demonstrating the presence of cryoglobulins in the blood and searching for a possible underlying cause." Croglobulemia Just got word that my cryoglobulemia (sp?) test came back positive. Thiswas the second one I had. The first was negative. Evidently, this is whatis causing my neuropathy issue in my right leg.I'd like to know if anyone has experienced the same problem. Myunderstanding is all I can do is treat the HCV.My neuropathy has been improving and I had thought I was "off the hook"since the first cryo was negative. The second one was done at ColumbiaUniversity so I believe it was done correctly with true results.Thanks for any info. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2006 Report Share Posted April 20, 2006 I am going to email my friend Barb and ask her if I can give you her email . She has suffered alot from the cryo and can give you lots of info . I do know that for a long time her legs were so swollen that she couldnt walk and was in tremendous pain . Hep c if left untreated can start manafesting itself in all kinds of ways , like porphyris cutanea tarda , iron overload , nonhodgekins lyphomas etc . They call hep c the silent killer for a reason ,it can kill you by destroying not just your liver but the rest of the organs also . I myself have neuropathy and degenerative spinal disease due to my hep ,iron overload and pct . Maybe treatment may make the cryo better . I have also sent you some more info .. Croglobulemia Just got word that my cryoglobulemia (sp?) test came back positive. Thiswas the second one I had. The first was negative. Evidently, this is whatis causing my neuropathy issue in my right leg.I'd like to know if anyone has experienced the same problem. Myunderstanding is all I can do is treat the HCV.My neuropathy has been improving and I had thought I was "off the hook"since the first cryo was negative. The second one was done at ColumbiaUniversity so I believe it was done correctly with true results.Thanks for any info. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2006 Report Share Posted April 21, 2006 That would be great, . I also have considerable swelling in my leg and foot. I'd love to "talk" to someone who's experiencing the same thing. The more information we have, the better we are able to deal with whatever comes our way! Dorothy -----Original Message-----From: Hepatitis C [mailto:Hepatitis C ]On Behalf Of elizabethnv1Sent: Thursday, April 20, 2006 9:25 PMHepatitis C Subject: Re: Croglobulemia I am going to email my friend Barb and ask her if I can give you her email . She has suffered alot from the cryo and can give you lots of info . I do know that for a long time her legs were so swollen that she couldnt walk and was in tremendous pain . Hep c if left untreated can start manafesting itself in all kinds of ways , like porphyris cutanea tarda , iron overload , nonhodgekins lyphomas etc . They call hep c the silent killer for a reason ,it can kill you by destroying not just your liver but the rest of the organs also . I myself have neuropathy and degenerative spinal disease due to my hep ,iron overload and pct . Maybe treatment may make the cryo better . I have also sent you some more info .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2006 Report Share Posted April 22, 2006 <phxlerner@...> my friend barb says email her . She can give you lots of info and tell you how she is coping . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2006 Report Share Posted April 22, 2006 I sent her an e-mail yesterday and didn't receive a reply. I'll forward it to her. Re: Croglobulemia <phxlerner@...> my friend barb says email her . She can give you lots of info and tell you how she is coping . It's a pleasure having you join in our conversations. We hope you have found the support you need with us. If you are using email for your posts, for easy access to our group, just click the link-- Hepatitis C/ Happy Posting Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2006 Report Share Posted April 22, 2006 I believe she finally started working again , so just give her a few days and she will get back to you . RE: Re: Croglobulemia I sent her an e-mail yesterday and didn't receive a reply. I'll forward itto her.-----Original Message-----From: Hepatitis C [mailto:Hepatitis C ]On Behalf Of elizabethnv1Sent: Saturday, April 22, 2006 1:52 PMHepatitis C Subject: Re: Croglobulemia<phxlerner@...> my friend barb says email her . She can giveyou lots of info and tell you how she is coping .It's a pleasure having you join in our conversations. We hope you have foundthe support you need with us.If you are using email for your posts, for easy access to our group, justclick the link-- Hepatitis C/Happy Posting Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2006 Report Share Posted April 23, 2006 Thanks, . I look forward to hearing from her & sharing stories. -----Original Message-----From: Hepatitis C [mailto:Hepatitis C ]On Behalf Of elizabethnv1Sent: Saturday, April 22, 2006 8:44 PMHepatitis C Subject: Re: Re: Croglobulemia I believe she finally started working again , so just give her a few days and she will get back to you . RE: Re: Croglobulemia I sent her an e-mail yesterday and didn't receive a reply. I'll forward itto her.-----Original Message-----From: Hepatitis C [mailto:Hepatitis C ]On Behalf Of elizabethnv1Sent: Saturday, April 22, 2006 1:52 PMHepatitis C Subject: Re: Croglobulemia<phxlerner@...> my friend barb says email her . She can giveyou lots of info and tell you how she is coping .It's a pleasure having you join in our conversations. We hope you have foundthe support you need with us.If you are using email for your posts, for easy access to our group, justclick the link-- Hepatitis C/Happy Posting Quote Link to comment Share on other sites More sharing options...
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