Guest guest Posted May 19, 2007 Report Share Posted May 19, 2007 I had hematuria that no one could figure out for quite some time. CT scans were read and the Radiologist blew this off as something else. The MRI I had done later was read by a sharp-eyed WOMAN Radiologist who caught the aneurysm. I did have some flank pain, but mostly was scared to death after I found out what it was... I might still have missed it, but had an insistent Urologist who used to write me letters insisting I needed to come in, if I was late for, or missed an appointment... The strange thing is that I still have hematuria. LIke you, I have a LOT of health issues and I have to address one thing at a time as best I can. Some time, I will try and summarize the way this all started for me, if I can remember it all... Does anyone on here have MGUS? Is everyone on here getting their doctor to check for it? I never would have found out I had this, had I not insisted that my old doctor run the bloodwork. I had ready there were implanted women with this and literally forced him to check this. My case is so confusing, that shortly after the test came back positive, after 12 years of caring for me, he dismissed me from his practice-AS THE PRESCRIBING DOC FOR MY PREDNISONE, NO LESS. I think it is highly irresponsible to dismiss a patient on steroids with no one to monitor them. It is not like you can just quit taking them after being on them every day for 12 years... But then, since this nightmare started, I have a new opinion of a lot of doctors and it doesn't match the old one... Like some of you here, I always thought docs were right on up there next to God... Then I went to nurses training. That opened my eyes somewhat. But, what really opened my eyes was the way implanted women have been treated. Cathie In a message dated 5/20/07 1:15:08 AM, DGRAHAMA@... writes: Cathie ~ Wow ! That is amazing ! ! I cannot believe all you have been through ! How did you find out you had a renal artery anuerism? What symptoms did you have? I am so glad that you were able to take care of it so easily ! Now you are a medical hero ! ! So kewl ! ~Hugs ~ Dede ************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2007 Report Share Posted May 19, 2007 Cathie, I have hematuria too. I have chronic renal disease. Been in renal failure a few times. Have had right kidney pain on and off since 2003, but didnt have the money to go to a doctor, once they find out you have lupus, and neuropathy, they go to town spending your money on all these tests , and I just didnt have it. My kidneys have been shrinking, not much but some, a centimeter. It said on my last ultrasound something about Renal parenchymal disease, my kidneys have low function, but still 70 so not too bad, but I have retained an incredible amount of fluid in my tissues. Have gone from 110-115 to 175 ! This occured almost over night. The first time I went from 110-156 in one week. Was diuresed for 9 days, and lost it all. Then over about 6-8 months gained it back then up to 175. For my heart they had me on 3 different diuretics a day, and they didnt work well, and were causing me pancreatitis, but that is a whole other story, anyway I took it upon myself to wein off of all of them, one at a time and slowly. Anyway, just had a bunch of tests to check my aldosterone and renin and metanephrines. Checking on my sodium pump in the kidneys. For about 2 months I have been having right hip pain. Very strange, but pretty intense, it is in the bone. Anyway, still trying to figure out what is goin on with my kidneys. Anuersyms run in my family. My mom had an aorta one, my dad has two iliac artery anuersyms, my grandmother had 3, and died during surgery to fix them, then a grandfather had one and died from it on my moms side. Anyway life is a puzzel, and a two sided one at that ! ! Hugs ~ DSee what's free at AOL.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2007 Report Share Posted May 20, 2007 Cathie, I think a lot of implanted women have had hematuria (blood in the urine) that has gone undiagnosed. . . Especially women who have had silicone gel implants that have ruptured or leaked. . . Not being a medical professional, I can only guess. . . But I believe there's a strong likelyhood that silicone irritates the kidneys and urinary tract resulting in hematuria. . . They know that the amount of silicone peaks at the time of explant for most women . . . So - it only makes sense that silicone passes through the urinary system . . . destroying tissues in its path. Drinking copious amounts of water would help - if one isn't retaining fluids like Dede. We constantly tell women to drink a lot of water . . . at least 1/2 ounce per pound of body weight daily. Urine should be a very pale yellow . . . If it's a strong yellow, it's too concentrated. . . However, B vitamins make urine yellow temporarily. Rogene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2007 Report Share Posted May 20, 2007 Terrible! . . . If nothing else, some members of Congress might be interested in her experience - at a time when they are trying to figure out how to get uninsured people covered , , , I think there's a state board that oversees insurance practices as well. But when people have insurance, they should expect the insurance companies to pay. Between genetic and birth defects - plus the illnessnesses brought on by behavior - overeating, drinking, smoking, reckless driving, implants, athletics, etc., I can see where they could refuse virtually any claim. Rogene DGRAHAMA@... wrote: Rogene ~ I believe it was blue cross ! ! Hugs ~ D See what's free at AOL.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2007 Report Share Posted May 20, 2007 In a message dated 5/20/07 8:09:38 AM, saxony01@... writes: Not being a medical professional, I can only guess. . . But I believe there's a strong likelyhood that silicone irritates the kidneys and urinary tract resulting in hematuria. . . They know that the amount of silicone peaks at the time of explant for most women . . . So - it only makes sense that silicone passes through the urinary system . . . destroying tissues in its path. Rogene: I believe I remember Dr. Blais telling me that silicone is fat soluble. If this is so, it is not filtered by the kidneys-only water soluble substances are filtered by the kidneys and passed out of the body via the urinary tract. I am not saying that it cannot be present in the kidney, or somewhere along the line there, and you are probably right about the irritation. I would not be surprised if there are tiny glasslike pieces that are present throughout the urinary tract which sit there and cause small amounts of blood to be passed. Are we having fun yet? Cathie ************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2007 Report Share Posted May 20, 2007 In a message dated 5/20/07 9:45:27 AM, devans@... writes: Darling Cathie: Welcome to this wonderful group of women. I do remember you from our Ilena's site...I think. I am positive for MGUS and it is an extra worry, but I have good doctors. Do you have MGUS? I am sorry that you have been through so much pain. Did you read my story before we were forced to take it down? Please take care and we will all be here to give you love and support. Stay close...love you........Lea Hi Lea: Thanks for the welcome. I have talked to you before via email, I remember, but it has been quite a long time ago. I read your story, but you know, I am having trouble remembering what happened just yesterday... I am sure there are others who can identify with that. I do hav MGUS and am followed by an Oncologist. I just saw her this week, and she monitors me every 4 months... Good to hear from you. Cathie ************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2007 Report Share Posted May 20, 2007 Nice to hear from you honey: Please get well soon........I have to go back to bed...love you.....Lea ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~` Re: Thyroid problems In a message dated 5/20/07 9:45:27 AM, devanscompusmart (DOT) ab.ca writes: Darling Cathie: Welcome to this wonderful group of women. I do remember you from our Ilena's site...I think. I am positive for MGUS and it is an extra worry, but I have good doctors. Do you have MGUS? I am sorry that you have been through so much pain. Did you read my story before we were forced to take it down? Please take care and we will all be here to give you love and support. Stay close...love you........LeaHi Lea:Thanks for the welcome. I have talked to you before via email, I remember, but it has been quite a long time ago. I read your story, but you know, I am having trouble remembering what happened just yesterday... I am sure there are others who can identify with that.I do hav MGUS and am followed by an Oncologist. I just saw her this week, and she monitors me every 4 months...Good to hear from you.Cathie**************************************See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
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