Almost pure blood and blood clots in urine

At this time would rather avoid the hospital! I have had abdominal CT scan, ultrasound of both kidneys and bladder, and cystoscope and nothing found. FISH test was "technically positive but not worrisome for cancer" according to urologist. He did want me to have a 3-month follow-up and am scheduled for March 29. Am currently working through my NP as she is much closer in distance (I have a driver who drives me through the city as I am autistic and can't handle traffic), and the urologist is a 1-1.5 hour drive away. I keep showing white blood cells in urine so we are trying to treat as infection for now...

@so1frustrated...You sound like me, but I have finally figured out what my problem. I have both Gelsolin (Finnish Amyloidosis) and FKTN (Fukutin Limb Girdle Muscular Dystrophy, a ready partner of Gelsolin. If you have FKTN, you almost always have Gelsolin). The Gelsolin opens the cell Actin web to let its protein fibrils into almost any tissue. In my case, into all my sphincters (urinary tract, vascular, esophageal, etc) The sphincter muscles become leatherized, hard, and uncontrollable. So I have to use a very sturdy catheter to force it through the urinary sphincter to where it can take in and move out the urine. But getting the cath into the tube above the sphincter requires a strong push, so I sometimes have to push very hard to get it in. Then, for the next several days, My urine comes out dark even very brown, like maple syrup. Other times it is much paler. When it gets this way, I will often lose up to a half cup of blood on the bedsheets overnight. If you live anywhere near Knoxville TN, get in tough with Jonathan Wall at the U, and ask about their PET (Positron Emission Tomagraphy) program for Amyloidosis diagnosis. It is currently the most likely true dX system available.

Wow, you have been and are going through a lot, but glad you have found your problem and know how to address it. Honestly am praying daily for wisdom on direction and protection from my God, and healing, however it is to come! I actually had a PET scan done 7 years ago when they were looking for cancer or other reasons for chronic hyponatremia, which is usually stable at between 132/133, but had dropped to 129. But praise God I am still here and kicking! So what you have been diagnosed is an autoimmune disease? I know I have autoimmune issues....

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.

@so1frustrated; I am hoping I can help you. First, any PET scan prior to the last few months, anywhere, will not be the same as this PET scan methodology using the new dyes and other chemicals and systems. Do go to the Ambrygen.com site, and get your analysis. You will need your doctor to talk to Medicare and tell them why you need the scan. Then they will pay for it. Second, then contact Ambrygen.com, and have them send you the kit. It is very easy. And just follow the directions. My gene number, at Human Phenotype Ontology (HPO.jax.......) is 2934). But get your doc to help you. If the doc refuses, get a new doc. Or talk to Bob Orlowski at MD Anderson in Houston or New Orleans.

@so1frustrated, I am reading your posts, and I want to commend you for your determination as you deal with your health concerns. It is not an easy thing to do, even in the best of times. You are fortunate to have a connection with a nearby NP. I do not have any experience with your condition, but I do have a respect/appreciation for kidneys due to my transplant. I am going to be thinking of you and hoping that your urologist appointment later this month goes well for you.

Will your NP be forwarding your medical records to the urologist so that he can refer to it? Are you making a list of the questions that you would like to ask?
How are you feeling these days?

Rosemary, thank you for your concern and encouragement. I am presently on day 4 of cephalexin 500 mg., and am seeing improvement in my urine color. I am hoping this will resolve the issue. My NP had me on 250 mg. 2 time a day but I talked her into increasing to full dose as even the lesser dose seemed to be helping a little. I still have some foamy urine and darker urine in afternoon and evening, but no longer seeing blood and overall improvement in urine color. Will be finishing course of antibiotic and am praying this is the problem (unidentified kidney infection). If this totally clears up will probably cancel urologist appointment and will go back only if problem comes about again. This has been a puzzle even for the urologist. Will update after finishing this last course of antibiotics. My NP has been forwarding all their results and actions so everyone is up to speed.

Thank you for following me in this. Sadly after a week of having normal looking urine and thinking all was fine after taking 2 courses of Cephalexin 500 mg 2x/day, the blood appeared again yesterday morning, the morning of seeing the urologist for follow-up. He is now scheduling me for a CT Urogram as 1st CT was done without contrast. My urine has been showing (in progression): blood of 3+ consistently; protein of 2+, then trace, now 1+; and leukocyte esterase of trace/trace/now 1+. All else is normal, and the blood panel my NP did shows normal kidney and liver function. He (Urologist) has also scheduled me for another cystoscopy in case he missed something the first time around. His focus is on cancer of the bladder because of previous history, although nothing has shown up yet. He keeps saying that he does not think it is infection because nothing is showing up on the culture. Please keep me in prayer if you are a praying person, and thank you for being there with advice and encouragement. Oh, he wanted to do another FISH test as the last urine cytology from my NP showed atypical cells again but I had to decline because of cost.

@so1frustrated, thank goodness your healthcare team is staying on top of this and that you are being closely watched and tested to figure things out. I will certainly keep you in my thoughts. I also want to let you know that you are not alone. Whatever the diagnosis, members will walk the journey with you and have relevant experiences to share. The community is a good place to also talk about your fears, concerns, and joys as you navigate the waiting game - in some respects, the hardest part. Do you have to wait long for the cystoscopy?

May 11 for the cystoscopy. The first one he did December 28 and all looked normal, as did the ultrasound with full bladder and voided well. It is very hard and frustrating that so far all has shown "normal" except blood in urine and of course the protein and leukocytes. Yes, very hard to "play" the waiting game as there is no obvious cause to pinpoint. If this is serious, hopefully we're finding in time.