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Dec 26, 2013 · Bed wetting in Kidney & Bladder

I have the same problem – sometimes my foley bag must be empited 2 or 3 times a night…

Dec 26, 2013 · Advice: Swollen Stomach in Kidney & Bladder

Did you request an ultra sound of the bladder – before my neurogenic bladder/extreme urinary retention was diagnosed some thought I was putting on excess weigh – my waist went from a 31 to a 34 in a few months time…

Dec 26, 2013 · I was diagnosed with neurogenic bladder in March, 2011, after complaining of [...] in Kidney & Bladder

I was diagnosed with neurogenic bladder in March, 2011, after complaining of severe muscle spasms and after a blood test was found to be in renal failure. After being admitted to a local hospital I was found to have 3,000 cc’s of urine (!) in my bladder (30 times the normal amount) and after the urine was drained with a foley my renal failure blood numbers returned to normal (thank the Lord) – but I have been with a foley ever since, due to my inability to self-catheterize and not being able to urinate when the foley has been removed for several hours at a time. Three (3) urodynamic tests all showed either little or poor nerve function and each time a diagnosis of neurogenic bladder, treated with intermittent self-catheterization was indicated.

In 2012 3 separate MRI’s of the spine showed nothing of consequence, however normal x-rays in 1998 showed lumbar or sacral spina bifida (I was recently told the MRI’s only show spina bifida as it affects the spinal cord).

I currently have a script for a brain MRI (I have a strong degree of claustrophobia), so that’s the final step to determine if anything in the brain is causing this terrible problem. After 3 years some might think it’s too late for my bladder, but I use a foley plug for a certain amount of time every day (from 30 minutes to several hours), so my bladder does fill on a daily basis, but in the end it seems to not to be MS as earlier thought, but a combination of some type of nerve damage due to spina bifida and increasing age (I’m in my late 50s), that combined with poor bladder management issues on my part that caused the bladder to increase in size over the years to the point that my nerves were damaged.

At this point to be frank I’m depressed over the entire issue and tired of what this problem has brought -guess it’s mostly my fault, because my kidneys still do not tolerate too much fluid intake well (eye puffiness and leg pain), so my own carelessness probably damaged my bladder and kidneys and I’ll have to live with the result…

If someone asked my biggest regret, it was thinking that urination is something that can be delayed for hours at a time – at work I’d have the urge to go at 2 p.m. but would wait until I arrived home – some 3 hours later…

Stupid…

Jun 16, 2012 · Unknown Cause - Neurogenic Bladder in Kidney & Bladder

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…

Thanks,

Glades2

Jun 16, 2012 · Unknown Cause - Neurogenic Bladder in Brain & Nervous System

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 neuogenic or flaccid bladder (3,000 cc’s at the time of admission) was due to something other than just the average urinary causes and effect…

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

Thanks,

Glades2

May 12, 2012 · WHAT do you rely on to get you through life's challenges? SPIRITUALITY OR RELIGION? OR WHAT ELSE? in Depression & Anxiety

Hello,

I’m a Catholic Christian and probably would have lost my mind over these past 14 months had it not been for my faith and personal relationship with Jesus the Christ.

After being without serious illness for my entire life, at age 55 I lost my ability to urinate on my own, and have been with a foley (indwelling) catheter for the past 14 months.

To this day, when in the bathroom at work I’ll notice other men relieving themselves naturally, and feel sadenned that I can no longer function that way, but through constant conversation with God, His Son and through the power of the Holy Spirit I’ve received the spirtual and mental and physical grace to keep going, through all the VERY unpleasant tests, through never-ending UTI’s, through ongoing bladder spasms, and the fear that my life will be cut short by this medical condition that has no real cure, other than the brutal self-catherization every 4-6 hours or the dangerous foley catheter or SP tube (again, I have the foley).

I’ve had my faith since being baptized as an infant, but it began to grow in a special way after my parents passed on in the 1980’s, and continued with the help of my second oldest sister (a parish volunteer and volunteer at administering communion), until she passed away from cancer 5 years ago.

I’ve always been a poor patient even for minor issues due to a fear of medical procedures, so rest assured (lol) that this entire issue as been a nightmare for me, but I’ll talk and talk and talk to God – though sometimes get VERY upset and will accuse Him of “not doing His job or punishing me”, etc., but then apologize and turn to Him for support, so it’s an ongoing relationship that will not end until then end of my life on this Earth and then will be before God – with the hope that He will accept my life as it was – though I have to try my best with what’s left of it…

I’ll be traveling to Minnesota in early June for an assessment at the Mayo Clinic and am praying that the folks there will be able to do more than my local urologists, but at least it will be worth the long trip, because I believe God is offering it to me – because miracles do happen (as I’ve seen them happen many times over the years in the lives of others and my own) when we go forward with nothing but our faith in His providence…

Glades2