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3am & Feeling Frightened

Have got another UTI and this time I have done some research (now more frightened than ever)!

Have had MS diagnosed for over 7 year now and after a rocky start when I was admitted to hospital with a ‘biggy’ as the nurses put it when I couldn’t even sit up let alone stand. After several weeks later I was put on Rebiff 44 and my symptoms and balance have been really good and I have breezed along feeling very lucky with life. I have had around one UTI every 18 months so not bad but this year I have had 3 so far and currently have one, which despite two lots of antibiotics does not seem to be clearing up with very smelly urine etc. I stupidly told my GP that my MS is really good and didn’t think that my UTIs are related (DOH)

Now at 3am after doing some googling I realise that initially after rushing to the loo every 5 minutes I now have urine detention and just hadn’t realised it. I have been researching self catheterisation and am now feeling terrified and somewhat depressed. My right leg is completely numb and I am wondering is this due to my UTI or am I having a relapse and this is causing the UTI?? Does my UTI have to be completely cleared up before I can see a urologist? Do I need to have a change of medication as maybe the Rebiff is no longer working for me? (my balance isn’t as good as before the UTI) - any advice would be very appreciated.

A x

Hiya A,

I can sympathise with you; UTIs are horrible things. Haven’t had one in many years, but when I did I always got the rigours.

If it is just a UTI; no it’s not a relapse; it is an infection that got in your water. If you have retention you must relieve it; the pain is unbelievable; I had it once about 35 years ago. Get yourself down A + E; or phone 999.

Your water smells probably because you’re not drinking as much; a bit of a catch 22.

Get over your infection and I’m sure you will find the Rebif is working for you. Yes; self-catheterisation is a good idea; must empty your bladder.

Mind you no one is sure about how long the benefits; if you get them; with a DMD lasts. It may be time to start thinking of changing?

George

Hi

You should be able to refer yourself to a bladder and bowel service locally. Ask your MS nurse (assuming you have one) or your GP.

You may have urine retention which could have an easy solution. Possibly you could change your weeing technique / position to help your bladder to empty. Try raising your feet up higher (helps with the bowel as well as bladder), lean forward slightly, maybe a bit of pushing at your bladder with your hands.

Also, many people take cranberry tablets, D-Mannose or apple cider vinegar. Any of these can help to keep your bladder healthy and scare off bugs. And obviously drink lots and lots of water.

Obviously think about your toilet habits, making sure you keep the urethra area absolutely clean, I used andrex wipes for years (or supermarket versions) to ensure cleanliness.

A B&B nurse will be able to do a bladder scan to see if you are retaining urine in you bladder. If so, it depends on how much you are retaining. If it’s only a bit, then you should be able to help fight off infections with cranberry, water, etc.

You may also just have a nasty bacteria causing the infection to resist the antibiotics you’ve been given. Check with your GP that the latest sample has been sent to the lab so they are treating it with the correct antibiotics.

Ultimately, if you are retaining a lot of urine, it might be a case of using intermittent self catheterisation. This is really not as scary as it sounds, once you’ve found the ‘right’ catheter for you (there are loads of different makes and you can try lots of different ones to see what suits you best), then it’s a simple matter. Either just a couple of times a day you use a catheter to ensure you’ve emptied the bladder, or more frequently.

I used ISC for 5 years and managed in the main to stay mostly infection free.

If you do have the infection still, it will impact on your MS symptoms. It doesn’t mean you are definitely having a relapse. Although obviously a DMD is designed to reduce the number of relapses, having a relapse doesn’t mean the DMDs not working. But you could decide its a good time to think about changing from a beta interferon to something that’s fit a better release reduction rate (e.g. Tysabri if you can get it, or Tecfidera).

Regardless, try not to worry. UTIs are a literal bloody pain. But you should be able to get past this without having to make major changes to your life.

And don’t forget, 3am fears are much much worse than 3pm fears. You’ll have decided that you’re about to die if you let 3am worries affect you too much.

Sue

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hiya A

sue talks sense! ssshhh dont tell her i said so!

i hope you are feeling more settled today-every goddam thing seems worse at 3am!

deal with the uti first-dont rush re changing your drug choice just yet.

ellie

Hahahahaha Ellie xx

Hi A, self catheterisation isn’t too bad. I used the smaller Compact ones and amazed how efficient it was. It gave me freedom to go out and uti’s reduced. I had to stop using them as I became physically difficult, I even fell off the loo a couple of times hahaha.

But neither GP, MS Nurse, Urologist has suggested you try self catheterisation, nor urine retention, so perhaps voice your concerns to them so they can confirm or eliminate the symptoms. Despite you telling your gp your MS is fine, they should know a uti, particularly the last 3 IS likely to be linked to your MS & will certainly affect MS symptoms.

It’s possible the numbness is due to the infection, you’ll be able to tell after your uti clears.

Good luck A, hope the uti soon clears for you.

Chrissie x

Don’t things look just terrific at 0300?

But that’s all pretty horrid at any time of day, and I am sorry things are so rough for you just now.

What is the procedure with you for getting to see someone on the team of the Consultant Neurologist who has you on his/her books? Whatever it is, I think it is time to set it in motion. If your GP accepted your view that the UTIs had nothing to do with your MS (which is not impossible - many GPs know little about MS, and anyway you might have been right, although I agree with you that this is unlikely…,) then it would be good to set that straight and recruit him/her to your cause of getting an urgent review by someone on the Neurologist’s specialist team.

It is lovely when MS is quiet and lets us get on with life. When it is suddenly demanding attention it’s an awful bore, but there you go. I hope that everything settles down quickly again. Even if it does so super-quickly, I still think you could do with a review.

Good luck.

Alison

Thank you for your kind comments - have just rung for my urine test results and they have come back negative??? my sample was extremely smelly and my GP was sure I had a UTI but now I am really confused also I think I may be retaining urine as I go to the loo thn need to go again 10 minutes later - what’s going on??

Anita x

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Hi Neats,

The muscles of the bladder need to coordinate to empty. One very common symptom of MS is that the muscle groups don’t behave. This results in the urge to go, when you get to the toilet you can’t go or just let out a dribble.

Ten minutes later you start all over again. Self catheterisation is a good way to get the bladder empty and quite simple when you get used to it.

Regards,

Anthony

P.S. chocorange talks sense as well but don’t let on I told you.

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Got to add my solution. Sit on the loo and think ’ don’t pee’. It’s how I empty every time. Lol, as it works for me wanted to share

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my most efficient trigger is putting my door key in the lock.

next minute i’m dashing for the loo.

get there and lower the relevant garments but niagara falls open just before i make contact with the toilet seat.

bugger!!!

Here are some bladder emptying techniques:

Double voiding Sit on the toilet and lean slightly forward. Pass urine as normally. When you have finished, stay sitting on the toilet. Now lean slightly further forward. Count to twenty and pass urine again. Some more urine may be passed. (This one I have tried and has worked)

The crede maneuver Sit down on the toilet and lean slightly forward. Place both your hands above your pubic bone on your lower abdomen. Gently push inwards as you lean forward a fraction more. Now try to pass urine. Do this several times to help push out as much urine as possible. Sue mentioned this one.

Running water Turn the taps on in the bathroom and let them run. Sit on the toilet and lean forward. Try to relax and listen to the water. This may help you to pass urine.

Percussion Sit on the toilet and lean slightly forward. Using your opened hand, start to tap your bladder. Continue tapping. The strength of the taps may need to be increased. The tapping may cause the bladder to contract and some urine may be passed. You may need to continue tapping again until you are sure your bladder is empty. (This one I have tried and has worked)

Stimulation methods There are a number of areas on your body that can be used to stimulate the passing of urine. You may need to experiment to find out if they work for you and which works best. (a) Pulling your pubic hairs (b) Stroking or massaging your lower abdomen (c) Stroking or massaging the inner aspects of your thighs.

Great info & advice, even a couple of wry smiles as we’ve all “been there, done that”, especially the front door key.

Carole, that make me smile - been there!

A lovely comment I came across recently - a good MS day is getting to the loo before going to the loo.

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I just heard a wee thing on the radio from a sleep expert and I thought of you (and me!) and our tendency to see things at their worst at 0300.

The guy said there is a good physiological reason for this tendency to catastrophise at 0300. It’s because, although we think we are wide awake, mind churning, some bits of our brains are actually already powered down and getting some rest. Unfortunately that tends to include the bit of brain that, during waking hours, helps us to process information in a rational and sensible way so that we can function and deal with our lives and keep the show on the road. No wonder it all looks black when that bit’s clocked off!

By the way, he added a useful tip for anti-insomnia DIY - count down from 1000 in 7s. I’ll definitely try that one next time.

A

x