Hi all as some of you no hubby got ppms his edds 7 in wheelchair has numerous symptoms but want some advice. First he had catheter fitted four weeks ago as can’t do self catheter today saw urologist he going do spc ASAP but want to no if any body had bad experience? Also I no there no treatment for ppms but I no if hubby goes up another level he not going for any criteria to have any treatment. So has anybody had HSCT ? Imr stem cell? Was any symptoms reversed do you feel any benefit? I not going watch hubby get worse and feel crap if I no can do something about it. Also of subject daughter 22 now got catheter in as well coz ger bladder not emptying? So head well truly burnt out but I got keep going for them any advice please
there are several people on here that have a super pubic catheter so maybe start a new thread with the title specific to this.
HSCT is too expensive for me.
has your daughter got an spc? or is she self catheterising?
you know that you are getting burnt out, so start looking after yourself too.
if you go down, your family will be up the creek without a paddle.
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