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UTIs , how bad ?

Hi ,

How badly can having a uti affect your MS ?

My MS started playing up a bit about 4 weeks ago, I had no symptoms of a uti ,but sent in a sample anyway just to check and it turned out I did. After a week of antibiotics I was almost back to my ‘normal’.

Fast forward to this past week and I feel like I’ve been hit by the MS bus, all of my MS symptoms have gotten so much worse.

It feels like a relapse , or could it be that my uti isn’t sorted ? Could a uti affect me this badly ?

This is actually the worst I’ve ever been, I feel (and look) like a very heavy drunk toddler, and I can’t take another sample in or contact my MS nurse until Monday.

I’m hoping it’s just an infection , I’ve been doing really well on Lemtrada , no relapses for two years.

Any input welcome

June x

june, sorry but i can’t offer any advice.

just rest well, get others to run around after you.

hoping there is nothing to worry about.

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The UTI might have got worse it can even with anti biotics.I would see a dr as they can become serious quite quickly if not treated.Infact some ot the anti biotics they give you for a UTI can cause a UTI,silly i know but true.

Hello June

Did your GPs confirm to you that the bacteria causing your UTI were ‘sensitive’ to the antibiotics you were given? Sometimes a GP surgery will see there’s an infection, give you a course of (Eg) Trimethoprim or Nitroferantoin, without following up with whatever the lab isolates the specific bacteria as. This often seems to clear up the UTI, but within days the infection is back.

On Monday (yes I know it’s a pain having to wait), take another sample in to your GP. Also, check with them that they had results from the lab from your original sample, and that the antibiotics were the right ones. If you are showing as having another UTI (the same one maybe?), they should give you the right antibiotics as were advised by the lab. Or, if you had the correct antibiotics, but maybe there was a choice of 2, they should give you the other. Sometimes for example, bacteria would respond to either Amoxycillin or Nitrofurantoin. If you were given Nitro, then they should now prescribe you Amoxycillin.

A UTI can make existing MS symptoms much worse. You can feel really quite ill with a UTI. So it’s entirely likely that you do in fact either still have the UTI, or that it’s come back. Meanwhile, this weekend, don’t do too much and try to get plenty of rest. Drink lots of water, it will help if every time you go to the loo there’s a weaker concentration of urine.

Sue

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I’ll be seeing my doctor and taking a new sample in on Monday if I can book a same day appointment. I know my MS nurse will want the up to date test results.

Hi Sue I was prescribed the antibiotics after my results came back from the lab , so I’m assuming they were the correct ones. (Nitrofurantoin I think) I’ll check with my GP on Monday. Thanks

Does anyone take D mannose for UTIs ? Does it actually work ?

My urologist mentioned D-mannose to me recently. I said that I have no faith in something that suggests taking ‘3 tablets, 1 to 3 times a day’. Either take 3 tablets a day, or take 9 a day!! And the amount of D-mannose in each capsule varies too. It just seems a bit random. She agreed and suggested that the most useful thing might be just encouraging people to drink more water!

But, having said that, many people believe in it and wouldn’t be without it. Might be worth a go.

Sue

I take D Mannose everyday and have done for 16 months. I think it works and after 13 uti’s in 22 months I was prepared to try anything especially as I was becoming resistant to antibiotics. The thing you have to remember with D mannose is that it will only work on ecoli bacteria and will only only treat an ecoli infection if it has anything in with it you will need antibiotics. If an infection starts I give it 2 days and if it hasn’t started to go then I get antibiotics. You have to be quite strict about how you take it to treat an infection even taking one dose during the night! The other thing you need to be aware of is who you get it from, I take it in water three times a day and it does take awhile to get rid of the bacteria that has plunged into the depths of the bladder lining. It is very expensive which is a drawback obviously but since the beginning of the year I have had only 2 uti’s. My urology nurse is beside herself with excitement and keeps telling people, including consultants to give it a try! Hope that helps.

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Ok, so my latest urine test is clear , I got the results today. I had finished my antibiotics about 3 weeks ago but put in another test as my MS symptoms were still pretty bad. How long does it normally take to recover from having a uti (if that’s what was causing my MS to suddenly worsen) or does this sound like a relapse ?

Generally June, once the UTI is clear, the symptoms clear up.

But, it is possible that having had the UTI has caused your bladder/urinary tract to start behaving differently. I have no idea why this is so, but personally my urinary tract has a mind of its own just lately.

I know I don’t have a UTI. I know I’m not having a relapse. But my bladder which usually retains urine (so I have to use ISC every time), has in the last couple of months, following a period of having on and off UTIs, starting overreacting. So there are times when I’m very urgent, almost to the point of wetting myself and it’s become more frequent too. So I keep testing for a UTI (I test my own) and it’s been negative for weeks.

I treat my urinary tract as though it’s royalty. I cosset and pander to it, making sure I drink lots of water, take probiotics, keep the system acidic with vitamin C. Recently I’ve started taking Hiprex to prevent UTIs.

But the change seems to be stuck now. Instead of being a retainer, I’ve slightly gone the other way.

So the point of this is to say if your only symptom is bladder changes following the UTI, don’t worry. Either your urinary tract will gradually settle down, or you’ll adapt and learn how to make it behave! (You’ve already considered D-mannose, try cranberry tablets or juice, probiotics or apple cider vinegar, and drink lots of water.) If you have other symptoms that make you think you could be relapsing, then get in touch with your MS nurse and get some advice.

Try not to worry.

Sue

Unfortunately all of my symptoms are playing up, walking, balance, dexterity ,weak arms, weak legs. Ironically my bladder seems ok at the minute.

June

Get in touch with your MS nurse and ask for help and/or advise. What a horrible shame. You have my sympathy. MS stinks!

Sue

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See told you… ms god dam does stink!

to be continued…

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