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so1frustrated (@so1frustrated)

Almost pure blood and blood clots in urine

Kidney & Bladder | Last Active: May 17 9:08am | Replies (55)

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Are you referring to possible heart problems? Just trying to understand. As a note, I only have Medicare for insurance and am on limited income. Just short of being able to get extra help, but alas a tad over the limit to qualify. I am already having to pay quite a bit and cannot afford anything not covered, at least in part, by Medicare. I had a stress test (treadmill) about 5 years ago and tested o.k. How did you get your genes checked, and how was this able to help you, and what was your problem? Thanks for any clarification you are willing to provide, and for your help.

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Replies to "Are you referring to possible heart problems? Just trying to understand. As a note, I only..."

Hi, @so1frustated; several things. First, any time you have a blood issue of any sort, the heart is involved. My Gelsolin is systemic, meaning that it can and will eventually take over every tissue and liquid of my body. To try to boil a genetic or any other sort of disease down to a single thing like heart problems, or cracking teeth, or easy bruising, is a waste of time and money. I know of no disease that touches only one type of cell in the body. There may be, but I have never heard of it. Second, a great place to start is Ambrygen.com. They offer a simple initial analysis of a small portion of your DNA for free, divided into two sections, Neuropathy and Heart. I settled on heart, I believe, and it got me started. Ancestrydna.com is a good second place. Then places like Nebula, Apollo, Sequencing.com, etc. At some point you will begin to find references to various National Institutes of Health (NIH). OMIM has a great listing of genes by six-digit numbers and gene numbers, based on symptoms and signs. Your doctor should help you with that. You can take that info to Human Phenotype Ontology and get a rather complete look at your syndrome. Two more things. 1) Do not give up. 2) Be patient. I have been struggling with my CRAP for 81 years now.