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Unknown Cause - Neurogenic Bladder

Posted by @glades2 in Kidney & Bladder, Jun 16, 2012

I was diagnosed with Neurogenic Bladder last year and not one urologist was able to determine the cause, other than perhaps poor bladder management on my part (a/k/a "holding it in") that might have caused permanent nerve damage, however, it seemed the retention problems started years before the 2011 crisis and were increasing every few years - more a sign of MS than my waiting to go to the bathroom, so I called Rochester, Minnesota and they do believe a trip there would give them a chance to determine the cause. Living in South Florida, it's a l-o-n-g way to Minnesota and I've been with a foley catheter for 15 months, so driving is out, and unsure if flying is safe with the balloon catheter that holds the foley in place (I have to ask my doctor about that), so it's a mess of a situation I'm in, as you can tell, though found this board to be of interest because my family doctor said that I remind her of the program "mystery diagnosis" (lol - I guess), though perhaps not so, because I was a club cyclist for 22 years and perhaps that lead to nerve damage - I just don't know...

However - when admitted to a local hospital last year, the ER physician twice asked me if I had ever been diagnosed with a disease (on asking he clarified that he wasn't referring to STD's but some form of illness), so he must have had the feeling that my extreme neurogenic or flaccid bladder (3,000 cc's at the time of admission) was due to something other than just the average urinary problems for a middle-aged man...

Any suggestions here would be appreciated - though it seems a trip to Minnesota (before the first cold front - lol) is the best option...



Posted by Anonymous-6a8d02fd, Jun 19, 2012

My husband has a neurogenic bladder with full urinary retention and nerve pain. At 30 years old, his bladder stopped functioning on Christmas day 2008. Pudendal Neuralgia is his current main diagnosis. Not all the symptoms fit, but it is the closest diagnosis that doctors in Kentucky, Tennessee, Indiana and Florida (Mayo). There are some options that exist to make life without bladder function more tolerable. Medtronic makes a neuro stimulator implant that stimulates the damaged nerve area which allows for urine flow. Granted it is not perfect, but it is better than nothing. However, getting an implant means no more MRIs. If you consider an implant: 1. Go to Mayo (it is worth the trip and the Jacksonville, FL location is closer for you) 2. Make sure the doctors have ruled out all other medical diagnosis (especially ones that include having an MRI). I wish you luck on your crazy bladder adventure. Please post your final diagnosis, as my husband and I would be very curious to know.

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