A UTI with advanced multiple sclerosis is no fun
It crept up on me very slowly, just think of a lion stalking its prey. Initially, I was blissfully unaware that I had an infection. Looking back with the benefit of hindsight I can see how I slowly deteriorated followed by a slow recovery. A urinary tract infection or UTI with advanced multiple sclerosis is no laughing matter.
A UTI can often make MS symptoms so much worse. It may even trigger an MS relapse and possibly worse if left untreated. It is so easy to check if you have a UTI, call your GP.
Initial symptoms
It all started with me going to the loo in the night to have a pee but was my bladder showing its age? Recently I had had four UTIs and was on a course of low-dose trimethoprim to prevent further infection. So you can see why a UTI did not appear on my radar screen.
Sometimes when I had a pee in the wee hours of the morning my urine possibly looked slightly cloudy, a tale-tale sign of a UTI, but I wasn’t sure. I always had a good drink of water before getting back into bed and everything was OK in the morning when I got up.
Waking up in the night for a pee was a matter of urgency. No messing around. out of bed and into the loo. Now do the business, insert a catheter then relief. Finally back to bed and try to fall asleep except by now I was wide awake.
I found a secret stash of trimethoprim, phew problem sorted. Thirty six hours later I knew it was a UTI, 4 pees in 2 hours and a stinging sensation were the give away signals but it was Friday evening. The GP surgery was closed until Monday 🙁
First thing Monday morning
I rang the GP surgery and two hours later a prescription for Nitrofurntoin was waiting for me in my pharmacy. My GP said that Trimethoprim was not good at clearing up a UTI. The new antibiotic was effective within hours
The doctor was right
Within 24 hours the cloudiness in my urine had disappeared. Over the next week I realised how many other parts of my life were affected. It was the insidious how the UTI had slowly made my MS worse in different ways. Walking, balance and my whole quality of life adversley affected me.
Within a couple of nights
Now I was not waking up in the night to have a pee. My balance and walking improved. I’d never noticed it was getting worse. That sounds strange but its easy to ignore a slight deterioration but any improvement is noticed straight away.
My quality of life went down hill as the infection developed but I was in denial. The new antibiotic was effective straight way but it took my body much longer than expected to return to its MS affected normal. Also remember to drink at least a couple of pints of water each day.
I have decided a UTI with SPMS is no fun. If in doubt get a urine sample checked.
Incidentally if the GP prescribes Trimethoprim to treat a UTI ask them for Nitrofurntoin instead.
Associated articles
Story of a Urinary Tract Infection (UTI)
Negotiations with the NHS after a UTI
February 2022
My wife has primary progressive MS and has had a Supra Pubic Catheter for about 5 years now. She suffers from multiple UTI infections that actually turn her catheter tube & bags dark purple (its quite pretty in a weird way) and she forms crystals in her urine which blocks the catheter. Each one is supposed to last her 10 weeks but over the last year she has had 31 catheter changes. Supply’s are often difficult to obtain and usually the blockages happen between 11pm & 3am or if we are out visiting friends and family. (so now she doesn’t want to leave the house as it can be embarrassing). This has resulted in less movement so that has created muscle wastage. The doctors have given her various types of antibiotics the result of which is she has now contracted C-Diff (Clostridium Difficile) a chronic bowel disease which they claim you can only get once. Well shes on her 4th bout of it now. Was hospitalised but discharged herself due to lack of care (which is a very long winded tale) and (for want of a better word) abuse from the Migrant staff there. There’s no happy ending or resolution, she’s still as poorly as ever with me as her sole carer even though I’ve got Heart Disease, COPD, Emphasema and Osteoarthritis. (please don’t suggest getting carers in…. I could write a book on the experiences we’ve had with them…
Hello Mike
This all sounds very traumatic. I’m not able to give any medical advice. I don’t know where you live. A referral to the uro-neurology department of the National Hospital of Neurology and Neurosurgery in London might be worth considering. This is a part of University College Hospital which has been an enormous help to me and my MS.
I do quite a lot on Twitter and this is part of a conversation I had with some one.
It took over a month for me to recover from last one. GP thought antibiotics weren’t working-tried 3. Ended up in A&E as UTI triggered non stop bladder spasms for 4 weeks. Sent home without anti spasm meds so self medicated with #cannabis
Very helpful ,taken note.
Get well soon .
Hello Denis,
Back on the road and all good