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what should I be asking for?

Hi ppms family, I need to moan and ask for suggestions please.

I have had urine urgency and incontinence for the last 3 weeks with abdominal pain on the right side and its getting worst, when I sit down I get a sharp pain in my abdomen. Last night I went to the supermarket after another day mostly in bed, used the stores mobility scooter when I walked across the carpark I wet myself no warning and no urge to go. It was like a scene out of “little Britain” only luckily it was in the car park.luckily I had just bought rubber mats for my new adapted car,so I put one on the seat. My next stop should have been to visit my partner in hospital! I had to drive home daughter ran in and got me a skirt to put over my wet clothing if i,'d have gone in and cleaned myself up I would have missed visiting time.

I have a routine appt Monday a.m with the continence nurse that’s why I have hung on the last few days. Every time I have an attack like this it seems to get worst, I can’t get to the toilet now before the flood gates open.

I am also suffering more upperback,neck and shoulder pain.

I can barely walk or stand as my knees and back lower themselves causing pain in my lower back, I become breathlessand need to sit down urgently before I fall down.

Why have I become so disabled within a 10 month period when the consultant says I will have slow progression with this type of m.s?

Doom &Gloom i know, I try to keep my chin up and am grateful for what I have, I just wish I didn’t need so much physical help from my family it makes me sad.

Hi Pollypocket, I really feel for you. I have read that there is a tablet for bladder issues. There is also botox for bladder which a lot of people have found very helpful. I have not had any accidents so far but I sometimes feel I dont completely empty my bladder.

I am still in kind of limbo. Been investigate now for 4 years and I either have PPMS, SPMS or delayed radiation myelopathy. Every thing else dodgy has been ruled out.

How long have you had MS ?

I hope you get sorted out with the nurse.

Moyna xxx

Oh, you poor thing

My bladder has only been really bad once (and that was on Dantrium, so I stopped it!), I mainly just have to reeeaaaaally relax and be very patient if I want it to really empty. I’ve never been a patient person but I’m learning, just cos I’m pretty anxious about the idea of having to self-catheterize etc.

I can’t really give any good advice as I feel like MS is stealing my life away before my eyes too.

Just know we’re all here if you need to talk

hugs

Sonia x

Hi Pollypocket,

I really feel for you,it must be awful, i have never had this problem, and hope to god i never do…i just have a small problem of retention…nothing compared to the problems that you have…i dont know how neuros come to their decisions,i really dont… i hope things improve for you, i really do

(((((((((((((hugs))))))))))))))

J x

Hello Pollyp

It is perhaps the worst of all the symptoms, or at least the one that is most cruel in a sort of rub your nose in it type of way. I usually get a 20-30 second warning but sometimes it doesn’t, almost when it knows I’m within seconds of a suitable convenience.

When I attended the appropriate clinic I had to be quite assertive about certain things; I was not going to drink 2 litres of water (I was having to drive afterwards through town) and I refused to entertain the idea of a catheter. I felt they just wanted the easiest solution.

As a result (I didn’t go back) I make sure that I have a change of clothing and ways of cleaning myself up. On long journeys I have been know to wear incontinence stuff-there’s plenty on line.

Finally, despite all the disadvantages of being dehydrated, judicious abstinence (of tea and water) becomes part of the daily plan. It gives me something to look forward to when I get home. I’m sorry to hear about your other symptoms and I hope you can find a way through it.

Best wishes, Steve x.

Cheers Steve, I will order some incont supplies and carry a spare set of clothing with me. Like you I don’t drink when i know I’m going out or whilst I’m out.

Thanks for your hugs Mrs J & Nindancer. Hopefully the waterworks breakdown is temporary I am hoping the plumber has some answers tomorrow

Xxx

Is it possible you have an infection? My frequency/urgency/accidents always get worse when I have one. My other MS symptoms are often worse as well so with a bit of luck you might find it’s all connected and might clear up if any infection is sorted.

I also self catheterise twice a day and although I was nervous about it at the beginning it doesn’t hurt and really isn’t a problem!

Hope tomorrow sorts things out.

Sarah x

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Hi Moyna, I was only diagnosed Dec last year, but Consultant thinks had it for 8-10 yrs.

Pauline xx

Pauline I really feel for you as I had a period where like you I’d wet myself with no or very little warning. I agree, take a sample of urine to see if you have an infection. I was taught to self catheterise which helped a lot as I knew my bladder was empty when I went out or to bed. I wanted to let you know though that sometimes these symptoms improve just as others fluctuate. My bladder has been better now for about 6 months, I still need to go to the loo as soon as I feel the urge but (touch wood) although I’ve had a few damp accidents I’ve not actually wet myself in ages.

I hope that my experience gives you some hope, Your continence nurse is the best person to speak to and you may even get everything you need to prevent embarrassment on the nhs. Hugs.

Cath x

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Hi Pauline,

I wonder as well if you have an infection. Touch wood! I haven’t had an accident since we have moved house and have no stairs.

I sometimes just got halfway up the stairs and couldn’t help myself.

If I go out I don’t have anything to drink beforehand. I also drink decaffinated tea which does help.

I am bit anxious as we are going by train to see our daughter in Edinburgh in a fortnight. I have booked a seat beside the toilet but I just know its going to be an anxious journey. My daughter is hiring a wheelchair for me at her end so that will be a first as well getting wheeled about.

I am getting assessed on Wednesday for a blue badge so my anxiety levels are through the roof just now.

its been raining here since about last Tuesday.

Mags xx

Hi Pauline

Sorry that things are difficult for you, you have been given some good advice, so I hope things improve for you.

Pam x

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Hi Pauline

Sorry that things are difficult for you, you have been given some good advice, so I hope things improve for you.

Pam x

Thank you everyone for your support, the continence nurse said she was contacting my m.s nurse today to request I be seen at MSclinic she suggested it may be a relapse as my scan didn’t show any concerning level of retention and also due to the decline in my mobility.

I’m going to send a water sample to my g.p tomorrow morning. I didn’t do this last week cause I thought the continence nurse would have, I’m very dim at present and didn’t even ask for a dip test! I’m being seen again in 6 weeks.

Still wetting myself! every time I do ,I picture the scene from little Britain the one in the supermarket!

Robin you’ll be fine everything will work out “I feel it in my water” he he.

I’ve made up my emergency urine evacuation bag for the car this little piggy went wee wee wee all the way home.

Hi Pauline,

so sorry I am late answering you.

couple of things that may help…the nurse can arrange for you to have NHS Tena pads.

I had both bowel and bladder continence problems which have been helped enormously by LDN. It seems to help different people with different symptoms and it can cause side effects for some people but I am very very pleased I started it. If memory serves me…which it doesn’t very often!..I think I’ve been taking it for two years now.

which ever route you go down I wish you luck…if you want to find out more about LDN just google the LDN Trust.

Nina x

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Hi Polly :slight_smile: my neurologist finally gave me tablets for bladder, I never had any accidents but came close, so he put me on vesicare which means your bladder can fill up more so far it seems to be working I was only diagnosed with progressive Ms in September I had no signs just knees giving way then becoming disabled.

I can barely walk so I don’t leave house except for hospital appointments currently having physiotherapy, what I want to know is how do I get rid of stiffness makes me very unsteady just doing physio exercises waiting for Ms nurse to contact me for baclofen not heard from her yet, gabapentin didn’t work for nerve pain so just started on Pregabalin hope it’s better back is painful.

Do try LDN - as one of its benefits is giving back your bladder control. Do drink plenty - don’t ration yourself. Otherwise your urine will become so concentrated - so acidic - that you will be open to uti’s. Also, the bladder is a large muscle - and it needs to be stretched and kept ‘inflated’. l take Apple Cider Vinegar - a large spoonful +honey mixed in cold or hot water and sipped. ACV is alkaline - and neutralises the acidic bladder - corrects the ph. leaving your bladder healthier.

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I’ve just lost my lengthy post to you.

Thanks for your suggestions I will start taking ACV &honey & get NHS tenas if I can!

I do have a UTI g.p perscribed Trimethoprim 200mg 7 days.

Alysea your progression is rapid!! Thought my 10 months were! Have you asked why,I haven’t yet, suppose the answer will be we don’t know as it affects everyone differently how about more physio, I’m not criticising just anticipating the reply.

I’m on Baclofen & Pregablin I’ve tried to live without them but I become a shuddering wreck.

was on vesicare but found they stopped working after a couple of months

Pauline xxx

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I asked my neurologist for LDN he wouldn’t give it me he said most msers swear by it but I don’t think it helps was his response which I thought was strange as he is a Ms specialist I was only 33 when I first started but took 17 months to get somewhere I had a awful gp, I changed in January and got diagnosed in September.

i am having physio my neuro physio comes to my house every month just started exercises but my balance is worse due to stiffness I asked him for something for it but he said it can make my weakness worse so at the moment I don’t leave house only when I go hospital, I don’t ask why I got it being so young cause they don’t know I think coming off pill may have triggered it as symptoms only started months after but I don’t think people know why.

Ms nurse being slow was suppose to contact me in September I need something for stiffness and spasms always unsteady if I don’t use my crutches :frowning:

Pauline, every sympathy. It’s horrible and degrading- makes me weep that it’s come to this. Tenas are very good, you won’t believe how much they absorb. Mind you, once you’ve used one you still will want to get cleaned and changed ASAP.

i find self catheterisation very beneficial. I go to bed with a properly emptied bladder, and start the day likewise.

my continence nurse can only give me the pads held in place by separate pants, so I buy the all in one pants for myself. Luckily now they are only for rare occasions when i haven’t moved my bowel at the expected time and either have to go out or go to bed. Safety first!

Kev x

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Hi kev, I now have a bag in the car all kitted out for mopping up the aftermath of any accidents following Steve’s post. Like you say it feels so degrading it has reduced me to tears. I am constantly asking my daughters if I smell of wee even though I’ve washed myself. I’ve made them promise to always let me know if I ever do.

Thanks Pauline xx