Hi all, Last June I had round two of Lemtrada. I then started intermittent self catheterization in August. Since then I have had a UTI every month bar 2. I was put on prophylactic anti biotics in March and still caught an infection that was resistant to the anti biotics. My MS nurse told me yesterday that they don’t know what my MS is like anymore because I’ve had infections for so long that my symptoms could be caused by either. I’m worse than I’ve ever been and fear that my RRMS has become SPMS but it could be a year’s worth of continual infections. I can’t go on like this. They haven’t given me an MRI scan for over four years either so how the hell do I know what’s going on? I now feel as if stopping ISC is the only way, but I really don’t want to go back to getting up four times a night for the loo, twenty times in the day, and dehydrating myself to the point of chronic constipation. I’m stuck between a rock and a hard place here. I’ve tried more than one type of catheter. I’m religious about washing / disinfecting my hands before proceeding, and being as clean as possible. Any help would be greatly appreciated. I’m so tired of falling over!
Hi Have you tried changing your catheter type? Some are easier to ‘hit the spot’ than others. Some I think are like trying to thread a cooked piece of spaghetti into a narrow straw. Wearing a blindfold. If you ask your delivery company for a load of samples, you could see what works best for you. I don’t know what you use right now, but I swap between Speedicath and Lofric. I reckon Lofric are best for complete bladder emptying, while Speedicath are easier to use. It all depends on you, your anatomy and dexterity. Then there’s all the things people use to keep their bladder on the right side of acidity. Some swear by cranberry, tablets or juice, for others it’s apple cider vinegar. Then there’s D-Mannose tablets. There are lots of different ways of using ISC but avoiding infections. You just have to find out what works for you. PM me if you want to. Sue I
One option is to have a suprapubic catheter fitted. I was like you, getting persistent infections when I was doing ISC. I was referred to a urologist, and we agreed to give an SPC a go. It’s really helped with the infections. I could count on one hand the number of infections I’ve had since getting it 3 years ago. It’s much easier to live with than ISC. Ask your GP to refer you to a urologist.
Hi, I am unable to advise re. Catheter, however in your post you said that you are worried about SPMS and haven’t had an MRI in four years. Can you ask your GP/MS nurse to refer you for an MRI, to put your mind at rest/put you in control. I understand your fears completely and know that worrying is not good, especially because stress can be a trigger for people with MS. Warmest thoughts Ali
I said in my OP they I have tried different ones. Makes no difference.
Thank you… I have asked repeatedly! I should have an appointment soon and I’m going to demand one.