Neurogenic Bladder/Hematuria...any suggestions??

  Dear Doctors:
  I was diagnosed with a neurogenic bladder about 4 months ago.  I developed a UTI that lasted for almost 10 weeks. I went through 7 antibiotics, IV'S and injections. Urologist found that my problem was that I was retaining urine. Started self-cath 3 x's daily and have progressed to about 8 x's daily with a goal of no more than 500 CC each time. I can still feel the need to go and can void on my own at times, but it is less and less frequent. I have developed a few kidney infections along the way, which has caused a great deal of back pain.  Because of a few other symptoms, my Urologist said she thought I have MS and I was sent for tests. Negative Cat Scan, Negative brain MRI and Negative Lumbar MRI.
  My IVP was normal except shows a non-functioning bladder.  I was also diagnosed with Hematuria 3 yrs ago and had a negative IVP and neg. Cystoscopy at that time.  I continue to have a very large amount of blood in urine. And my recent IVP shows ok except for non functioning bladder.
  I saw an MS Specialist today who told me Neurologically, my symptoms dont call for more tests at this time, but to watch for new symptoms of worsening of the ones I have now.
  I am relieved and thrilled to know that he doesnt think I have MS, but am frustrated because I feel like Im back at square one.  Neurologist says its Urological, and the Urologist says its Neurological.
  My Neurologist said that there are some tests that a Urologist can do to determine cause of hypo bladder but that there is nothing that can be done to improve that situation and that I will be doing self-cath long term.
  Do you agree with this?
  Does this sound like a Urological problem to you?
  I have an appointment with the Mayo Clinic in November and Im wondering if I should even go.
  Any suggestions?
  Thanks for your time and help......Diane
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Dear Diane,
You seem to be having a poorly contractile or acontractile bladder resulting in recurrent urinary tract infection (UTI) and high residual urine.  Sometimes it is difficult in females to elucidate the exact etiology for this condition.  Potential causes include, but are not limited to, occult neurological disease, lazy bladder syndrome and autonomic neuropathy.  
The evaluation protocol includes detailed neuro-urological examination, imaging, urodynamics and evaluation of spine and nerves by focused imaging and neurological consultation.  In many patients this protocol does not provide the answer.  However it is important to have these tests performed so as to exclude any potentially life-threatening condition.   These tests also will serve as a baseline for any future evaluation.  
As regards to management, it requires patience.  At this time it is important to keep the bladder empty by Clean Intermittent Catheterization (CIC) and fight infections with appropriate antibiotics.  Few new management tools are emerging, but still are at an experimental stage.  I will just mention them so that you can discuss them during your trip to Mayo