Last reply 11 months ago

Hi all, i do not want to sound like a pessimistic but I find myself crying every day….๐Ÿ˜ช๐Ÿ˜ช go to toilet in my lovely scooter and almost every time i can go back to scooter but i am unable to stand up to pull pants and trousers up and i cry i cry and it takes me 1-2h to manage to do it.

Anybody in same situation?

Thinking of talking to gp for one of this operation where they put a b…. cannula through tummy to wee in a b… bag.

Anybody going through this? Xx

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11 months ago


Sorry, I know it can be shit but don’t let it beat you.

what things are you already trying lifestyle wise? there must be a way to help this because its shit.
are you eligible for any trials or stem cells?


11 months ago

Thanks @rachaellouise for your answer

All this is big s…. i am only 44….
Not suitable for stem cell, they stopped fingolimod because they fear i may have had pml when mri was run in September blood test JC virus is high 2.4 they are doing spinal tab next week ๐Ÿ˜ช๐Ÿ˜ช๐Ÿ˜ช but because now i am spms i won’t come back to fingolimod ( it was not working anyway….) I am hoping to be suitable for cladribine though, not many options, feeling really sad all the time ๐Ÿ˜” My smile is gone….

11 months ago

@mmhhpp why are you unsuitable for stem cells and the trials! ?

Yes it is shit at 44 but their must be a way to bring that smile back
Have you tried any of these protocols with diet or functional medicine etc ?
I know theirs a lot more to it in lifestyle changes ! Itโ€™s hard but they must help in some ways.
Iโ€™m trying to figure out what will help my pain . I take tumeric but maybe I need to take more. Iโ€™m racking my stressed brain cells . Hard to think when stressed !

You know short term do what helps you and work doesnโ€™t mean itโ€™s forever.

Rachael x๐Ÿ˜ƒ

11 months ago

I have not had this procedure done, but I have read other forums talking about it. All of the MSers on the forum agreed it was the best thing they have ever done. Are you able to dump the urine bag several times a day? If you can than I would give it serious consideration. I just had a relapse and needed to urinate about every 10 minutes for the rest of the day. I didn’t think I was ever going to get out of the bathroom. Potter

11 months ago

Hi @rachaelloise

I am not qualified because i am spms, apparently it does not work if so….I even went to Sheffield uk (good group there)
Thanks so much for replying….I do eat well and tried few things but nothing seems to have dramatic effect….

@potter thanks to you too for replying. I read on BBC about a woman who had it done and she said it was the best thing she had done, that got me thinking. The only thing it stop me is that although it is torture at least i do some exercise while trying to lift myself up but i am reaching a point of not coping anymore. It might be the next step to consider……

11 months ago

@mmhhpp , I can relate to your situation. I wear shorts 365 days a year, unless I’m going out somewhere, which is rare.

I realise that a suprapubic catheter is an answer, but it’s not one that I will entertain at the moment. I do like to swim, when I can get out, which hasn’t been much recently, and I can see that being problematic/awkward.

Are there other things which you could consider first, e.g. grab bars, to maintain some normality for a bit longer? Or, are you comfortable encompassing the benefits, and risks, of this?

11 months ago

It sounds like you are really fed up and down atm, not surprising, given the weather, time of year and nuisance symptoms. Your only human Chick!

And You ainโ€™t alone sista x Iโ€™m sure plenty of us relate.
The constant adapting to different symptoms can be exhausting and burn your head out.
I find checking out for a bit and giving my brain a rest from thinking , and a lot of mindfulness helps.
Our brains get exhausted quicker than we think – and thatโ€™s when the mood can take a nose dive, so donโ€™t overthink stuff when you feel vulnerable Chick x
And listening to music helps me to get my heartbeat pumping, which is good for your immune system.
Get your groove on girl!
I do all I can to accept reality, try and change what I can, not try no getting frustrated with what I canโ€™t …
And treating myself like a princess lol this gets me through.
Oh And shovelling a lot of vit d down my neck.
A good day always follows a bad one,I reckon its the way the universe works – so work with it and only allow positive thoughts in -x

Happy new year everyone. Btw.๐ŸŽ‰๐Ÿ”ฎ๐ŸŒช
Next year is gonna be ace so keep the faith kids

11 months ago

Hello @mmhhpp, sorry you are so sad. This bloody season of goodwill thing has a lot to answer for, right? No time like advent to bring us all a sense of reality, reflection and fear for the future! One powerful lesson I have learnt since being diagnosed is to not try to hard to stick to my previous abilities but to embrace anything that maintains a quality of life and makes day to day easier. I would ask to have a chat with your neoro or nurse as soon as possible about your option. Doing exercise as you do coping with your current situation is a real positive, but equally, so would getting back the pockets of time that toileting takes. Wishing you lots of love and support x

11 months ago

Wish I could help ๐Ÿ™ sorry you have to go throu this dont upset yourself and try not to cry ๐Ÿ™ im afraid your nerves get worse sorry for not being very helpful.

11 months ago


You are allowed to be frustrated & angry – seriously.

Nobody was promised anything the day they were born except potential & possibilities… I lost my first wife when she was 31 due to Scleroderma. I never expected to get to 30 due to my serious partying years – I married a Goddess then lost her too soon. The Saint died while the one who deserved to die keeps living… Who knew?

You are allowed to cry every now & then; we all are allowed to. The key is to pick yourself up then move on…

Life is a journey & we all know the destination. Enjoy the ride…

11 months ago

Hi @stumbler
Yes i do have bars next to the toilet but they are of no use if i cannot stand up… frustrating because it changes from day to day and within same day….

The answer with suprapubic catheter, then the problem will be number 2s……nightmare

Thanks to cheer me up @mermaidia11
Nice music!

Thanks too to @nutshell88 for your comments

Thanks for the advices @vixen

Really sorry to hear about the loss of your wives…..I don’t know what to say….life is so tough sometimes…๐Ÿ˜ž

11 months ago

@mmhhpp , as suggested above, do talk to your MS Nurse and discuss all the problems you have with the “bathroom functions”.

They should know all the options and what is available.

Good luck and let us know how you get on (and off! ๐Ÿ˜‰ ).

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