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Almost pure blood and blood clots in urine
Kidney & Bladder | Last Active: May 15 9:54am | Replies (61)Comment receiving replies
@so1frustrated Sounds like you have either what I have or something similar. Have you had a genetic analysis? Even the $70 version might tell you what you need to know. Mine uncovered many deleterious genes and syndromes, including Gelsolin, RyR2, FKTN, a bunch of leukemias and anemias, and many other things. It appears the GSN (Gelsolin) may be the buggar here. Seems my sphincter has been invaded by the GSN and some of its helpers. They have leatherized and solidified the sphincter muscles to the point that I cannot release that valve without force from a heavy plastic catheter, which I get from 180 Medical. It is also making a mess of my skin, nerves, heart, system valves everywhere, etc. I bleed up to 1/4 cup of clots and considerable un-clotted blood almost every day. The doctors don't have a clue outside my genetic work. A neurologist and/or oncologist might help you. I had my work done by several companies, including Ambrygen, AncestryDNA, Sequencing.com, LivingDNA, Nebula, and a few others. Eventually I received an "Expression Atlas" which told me how many genes of the GSN were impacting various sites in me. 53 sites, and about 10,000 genes, looks like. And, along with this, I have a bunch of others not involved with GSN, including mis-guided Platelets, anemias, leukemias, etc.
Replies to "@so1frustrated Sounds like you have either what I have or something similar. Have you had a..."
@oldkarl, You are smarter than me! Or at least better versed in this category of medicinal advances. Thank you for sharing.
Old Karl, where and how can I get the $70 dollar test? This might be worth getting, although I have submitted a
"spit" sample to a group that is studying genetics in relation to autism, which I have; officially diagnosed Asperger's. Submission was 2 years ago, and have not heard anything back yet; they did say if they found a "life-threatening" gene they would inform but have yet to hear anything back. I am going to ask my NP Wednesday for a referral (hopefully "urgent") to a nephrologist/internal medicine doctor a little closer to home then the urologist, so will be getting both input. The urologist is so bent on trying to find cancer (which is not a bad thing), but afraid he might be missing other possibly crucial things. Do you have any doctor working with you, and are they able to help you? Thank you for following this and giving me some input .... IF you don't mind me asking, how old are you and when did all this start happening to you?
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@so1frustrated, I think that you are doing the right thing to go ahead with the tests in May that you n had previously questioned. You have been enduring this repeated blood in urine for long enough with unsatisfactory results.
Although you have mentioned concern about the possible results, and the financial concerns for testing, as a mother of 2 sons, I want you to be able to return to your normal life.
Ask to speak with a social worker about financial resources.
My thoughts and prayers are with you.