Hi I am not dx and currently having a review re neuro/ neurosurgeon. awaiting mris sun I had worrying incident…anyone else had this? I went out to shop on my trike…came back and transferred to my usual wheelie. only to find I was soaked through to my cushion…had no idea it had happened…it was a fair bit of urine…and I have never had this happen before. bearing in mind my bladder wasn’t full and I’d o ISC through a stoma in my belly. button…I went to change clothes etc and found my left leg was very stiff and heavy…I could not put my foot flat in the floor…it is much the same today and am seeing Continance nurse at home this morning as am having trouble doing isc due to arm weakness on left and shoulder pain and lack of co ordination and grip on both hands. hope she can help may have to havve an in dwelling catheter in my stoma . also seeing gp later and hope she can request I been seen again in neurosurgeon clinic. Continance nurse referring me to a urolgyst ASAP. I was quite shocked at what happened on sun enough to seek advice at ooh gop and they saw me and dipped my urine…no infection but blood present she adv see Continance nurse ASAP and urolgyst. Inhave new numbness in my left buttock, back of thigh and inside of keg and also I think I am numbe all around private area as I didn’t actually feel the urine coming out. nurse thinks it wasa spasm which also affected my leg. so will mention to gp. it hasn’t happened again since and hope it doesn’t. em
ps I have had retention of urine since 1998 and done isc since then…
l know just how you must have felt - l was so glad when l eventually had my SPC done. lt’s been 18yrs now - and l manage it very well - lts made such a difference to my life. PM me if you need any info. Can’t believe that you still have not a diagnosis though.
Hey F thanks …glad your SPC was Agood move I feel same re mitrofanoff and doubt I would have been able to go back to work after 10 yrs without it as isc through the urethral route had become impossible due to spasms which made it impossible to put catheter in or remove it…so after 5 yrs of struggling and ongoing infections I opted for it… anyone else considering mitrofanoff stoma or SPC should seriously conisider it as an alternative to an I dwelling catheter