Gross hematuria, flank pain, and insomnia

[Arst]

Hi, I am a 22 year old male diagnosed with ADHD(2008), and have been seeing a nephrologist about my hematuria (2004). I have had a cystoscopy done, and many blood tests done. Family has a history of diabetes and cancer. I am on Ritalin for ADHD, and take pyridium for the burning in my urine. All of my blood tests came back negative for STD/Sickle cell. I exercise regularly, and eat very healthy.

Now my condition; it is sporadic, seemingly random bouts (2-4 times a month) of flank pain and red - black urine. It renders me unable to sleep, and function correctly. The nephrologist told me that a biopsy was the only way to find the cause of my disease, as he believes it is genetic. However, the outcome of that test would tell me nothing, being as there is no treatment for these diseases, so he advised against getting it done. Also, I get very sick randomly, and usually end up with an IV and a overnight at the hospital (Strep/infection). When I can, I sleep 12-14 hours a day.

My question is; Is there anything I can do to return to normal?
My life has been shattered, I have been kicked out of the military for this. The last job I had, "let me go" because I missed a month, only being there 3 days, and had to get rushed to the hospital (103.4 fever).

[Dr. Safaa Mahmoud]

Hello,

This is really a difficult situation to diagnose and as your physician advised the best way to reach the diagnosis is by kidney biopsy.

However, I would like to give you a list of some of the possible causes that might help you be sure that all possible causes have been excluded by conventional investigations as you mentioned.

-Blood clots in urine usually indicate a cause below the kidney.
-Frank hematuria due to kidney glomerular causes is not painful.
-Urinary tract infection presents with dysuria, fever, pelvic pain and hematuria.
-An early-morning periorbital edema, dark-colored concentrated urine are seen in kidney glomerular cause.
-Hematuria and anemia with low platelt count is seen in hemolytic uremic syndrome.
-Post infectious glomerulonephritis usually occur after sore throat or skin infection.
-Systemic conditions like SLE and Henoch-Schönlein purpura are usually associated with joint pain, skin rash
-Familial disease are suspected when a positive family history of renal disease is found like collagen vascular diseases, stones, or polycystic kidney disease.
-Autoimmune diseases characterized by increase level of IGA are diagnosed by serology blood testing and kidney biopsy.

So, CBC and blood film (smear), complement tests, IgA level, ESR, LDH ASO, ANA, DsDNA, and urine analysis and culture are among the essential investigations.
When results are not conclusive, kidney biopsy is essential for diagnosis and proper treatment.

Hope you find this information useful.
I advise you to follow up with your Doctor and to discuss with him your concerns.
Please keep us updated.
Best regards.

[Arst]

Thank you for the information, I am going for my biopsy in January and will post the results.