This was the most unpleasant and painful test I've had so far. The tech made me sit in this chair that looked like something out of a medieval torture chamber and all sorts of electrodes and sensors were attached to me. I was supposed to empty my bladder into this funnel, but I found it very hard to do, especially as I was unable to relax while perching forward precariously on this chair.
I knew I was emptying incompletely, but on this occasion I apparently still had 750 ml of urine in my bladder after my best attempt. The urologist did not think this was a good thing, especially since the normal total capacity of the bladder is only supposed to be around 500 ml.
After emptying my bladder, the tech started filling me up with sterile saline water and I was supposed to say when I got the urge to go. The she drained me again
*Sensory neurogenic bladder: This seems to be the cause of most of my problems. My bladder does not get the signal that it's full until way late ("delayed first urge" was what the urologist called it). When the tech was filling my bladder with water, I never got a real urge to pee and didn't even have the first bladder pressure sensation until over 230 ml (and the sensations I did get were associated with bladder spasms). Apparently, the normal first urge to pee is around 125-250 ml. Since this is supposed to be an automatic, autonomic process, the urologist didn't think I could consciously trick my bladder into thinking it is time to pee.
*Detrusor (muscle of the bladder wall) overactivity: I think this means bladder spasms. When the tech was filling my bladder, most of the bladder sensations I did feel were associated with bladder spasms (apparently abbreviated UDC for "undesired detrusor contractions")
*Large capacity bladder: Because I don't get the signal to pee when I should, my bladder capacity has expanded. My bladder muscle has some thickening of fibers. This is not a good thing according to the urologist, who also said that an overstretched bladder can't squeeze.
*Detrusor (bladder) external sphincter dyssynergia (DESD): The sphincter muscle is apparently what enables you to be potty trained. Contracting this muscle prevents you from peeing when you don't want to.
DESD "is caused by neurological lesions between the brainstem (pontine micturition [urination] centre) and the sacral spinal cord (sacral micturition centre)."
"When detrusor external sphincter dyssynergia (DESD) occurs, there is a lack of coordination between the bladder and the external sphincter muscle, which is the muscle that controls the emptying of the bladder. Instead, when the detrusor muscle of the bladder contracts, the external sphincter may spasm and stay closed, rather than relax and allow urination."
In my case DESD is both a good and a bad thing. Good because it is preventing me from having accidents; bad because it prevents me from peeing when I want to.
*No SUI (stress urinary incontinence): I didn't leak when the tech asked me to cough or bear down so that's one positive thing. I only seem to leak when I've waited too long to go to the bathroom and then only a little.
*Normal EMG: I guess this means no problems with the relevant peripheral nerves
*Incomplete void (urinary retention)
The tech expressed surprise that I don't suffer from UTI's, but I don't. I think I maybe had one once in college.
I had my follow-up with the urologist last week.
Ideally, she would have liked me to to self-cath at least once a day before bed. Otherwise my bladder never knows what it feels like to be empty. Plus I likely could sleep through the night if I did this. However, my lack of fine motor control due to reduced sensation and proprioception in my hands means that I am unlikely to be able to self-cath. I can't do much of anything with my hands if I can't see what I'm doing. I have recently been making more effort to empty completely after all this depressing news, but I'm not sure how much good it's doing.
Before deciding what to do, the urologist had me pee in one of those plastic hats and then did a bladder ultrasound. With a lot of effort (more than I normally make) I managed to get out 200 ml and that left only 231 ml in my bladder. The urologist said she could live with this since I'm not having UTI's or discomfort. We will try conservative treatment for the moment with a six-month follow-up.
However, long term something will probably have to be done. Either I have to figure out how to cath or I will need some sort of more invasive procedure such as a suprapubic tube (SPT) or what she called urinary diversion. Then she told me that she didn't want to escalate to that yet and that she always tried to think more than one step ahead. As time goes on, many MS patients develop cognitive difficulties and this can lead to bad bladder outcomes. She told me about a patient who had one of these permanent catheters who was in a long-term care facility. The patient had cognitive difficulties so didn't remember to empty her bladder and apparently the staff were also sometimes inattentive so the patient's bladder ended up rupturing three times. It was rather sobering that she thought this was a likely future for me (of course, my last neuro notes concluded that I "represent a high degree of complexity with significant risk of morbidity." That plus the fact that I am having more problems recently, especially with my legs, is forcing me to consider bleaker outcomes than I'd like.)
Anyway, this is probably TMI, but I hope some of this info about different types of urinary problems is helpful to someone.