Guest guest Posted October 1, 2001 Report Share Posted October 1, 2001 ..Donna, I get the headaches with the tender spots on my scalp. I also have Vasculitis. Could you tell me what Cryoglobulinemia is? Thanks, Sandy Cryoglobulinemia is a type of vasculitis. I understand that immune complexes travel through the blood stream. People who have Cryo usually have rashes on their legs at times. I have had many out breaks of rashes, especially on my lower legs, it also features joint pains, with and without redness. There is a test for Cryogoblulines that can be done. It is really important that the lab is familiar with the test. They cannot refrigerate the blood before testing. The Cryogoblulines are released when there is a drop in temperature. One of the targets of Cryogoblulines is the kidneys. I almost always have traces of blood in urine samples. You have to watch for protein in the blood. The treatment for this is pretty much the same as RP. According to many articles that I have read, they estimate that up to as may as one-third of the people with RP have cryoglobulinemia. There is a lot of information on the web about this. The best site I have found for medical information is MDconsult. It is a site for medical staff and they offer a free 10 day free trial. They do not ask for any credit card or any thing. They only allow you the free trial one time. If you have not used it yet, I highly recommend it. Before I got my dx for RP they had dx with cryoglobulinemia. Now I have both. If they is any information that I can help you with or experience I have had please feel free to contact me. You can call me anytime also. . Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2001 Report Share Posted October 1, 2001 ..Donna, I get the headaches with the tender spots on my scalp. I also have Vasculitis. Could you tell me what Cryoglobulinemia is? Thanks, Sandy Cryoglobulinemia is a type of vasculitis. I understand that immune complexes travel through the blood stream. People who have Cryo usually have rashes on their legs at times. I have had many out breaks of rashes, especially on my lower legs, it also features joint pains, with and without redness. There is a test for Cryogoblulines that can be done. It is really important that the lab is familiar with the test. They cannot refrigerate the blood before testing. The Cryogoblulines are released when there is a drop in temperature. One of the targets of Cryogoblulines is the kidneys. I almost always have traces of blood in urine samples. You have to watch for protein in the blood. The treatment for this is pretty much the same as RP. According to many articles that I have read, they estimate that up to as may as one-third of the people with RP have cryoglobulinemia. There is a lot of information on the web about this. The best site I have found for medical information is MDconsult. It is a site for medical staff and they offer a free 10 day free trial. They do not ask for any credit card or any thing. They only allow you the free trial one time. If you have not used it yet, I highly recommend it. Before I got my dx for RP they had dx with cryoglobulinemia. Now I have both. If they is any information that I can help you with or experience I have had please feel free to contact me. You can call me anytime also. . Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2001 Report Share Posted October 1, 2001 Donna, Thanks so much for the info. Makes me wonder how many types of Vasculitis exist.. Sandy Cryoglobulinemia is a type of vasculitis. I understand that immune complexes travel through the blood stream. People who have Cryo usually have rashes on their legs at times. I have had many out breaks of rashes, especially on my lower legs, it also features joint pains, with and without redness. There is a test for Cryogoblulines that can be done. It is really important that the lab is familiar with the test. They cannot refrigerate the blood before testing. The Cryogoblulines are released when there is a drop in temperature. One of the targets of Cryogoblulines is the kidneys. I almost always have traces of blood in urine samples. You have to watch for protein in the blood. The treatment for this is pretty much the same as RP. According to many articles that I have read, they estimate that up to as may as one-third of the people with RP have cryoglobulinemia. There is a lot of information on the web about this. The best site I have found for medical information is MDconsult. It is a site for medical staff and they offer a free 10 day free trial. They do not ask for any credit card or any thing. They only allow you the free trial one time. If you have not used it yet, I highly recommend it. Before I got my dx for RP they had dx with cryoglobulinemia. Now I have both. If they is any information that I can help you with or experience I have had please feel free to contact me. You can call me anytime also. . Donna DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2001 Report Share Posted October 1, 2001 Donna, Thanks so much for the info. Makes me wonder how many types of Vasculitis exist.. Sandy Cryoglobulinemia is a type of vasculitis. I understand that immune complexes travel through the blood stream. People who have Cryo usually have rashes on their legs at times. I have had many out breaks of rashes, especially on my lower legs, it also features joint pains, with and without redness. There is a test for Cryogoblulines that can be done. It is really important that the lab is familiar with the test. They cannot refrigerate the blood before testing. The Cryogoblulines are released when there is a drop in temperature. One of the targets of Cryogoblulines is the kidneys. I almost always have traces of blood in urine samples. You have to watch for protein in the blood. The treatment for this is pretty much the same as RP. According to many articles that I have read, they estimate that up to as may as one-third of the people with RP have cryoglobulinemia. There is a lot of information on the web about this. The best site I have found for medical information is MDconsult. It is a site for medical staff and they offer a free 10 day free trial. They do not ask for any credit card or any thing. They only allow you the free trial one time. If you have not used it yet, I highly recommend it. Before I got my dx for RP they had dx with cryoglobulinemia. Now I have both. If they is any information that I can help you with or experience I have had please feel free to contact me. You can call me anytime also. . Donna DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
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