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Mum newly diagnosed and struggling

My mum was diagnosed about a year ago after tripping and losing feeling below her knee after a certain length of walking. She’s 48 and follows a strict MS-diet religiously which hasn’t relieved her symptoms at all. She’s finding it extremely difficult not being able to go for long walks and she struggles with holding her bladder which is awfully embarrassing for her. My heart breaks and I’m not sure how I can help her. She hasn’t been offered any drugs yet and she says that what she’s read of the side effects she’s not sure she wants to take them anyway. Will her mobility get steadily worse? and her memory? Is there anything she can do to keep the MS at bay? I feel lost and I feel like I’m losing my mum. Any help and advise is appreciated more than you know.

Lucy

Hi Lucy, so sorry for you & your mum, it is horrible watching someone you love struggle in front of you. Do you know which MS she has? Not everyone gets the side effects from drugs, & mostly they subside once the drug has been taken for a little while. If your poor mum does get any effects, the neuro team will change them. Mum does need to ask for support from her neuro & tell them how she is, they will help. I used to walk miles & hold down a highly stressful job, but sometimes you have to take a long, albeit hard stock of your now capabilities, it does no good to push yourself to the point it is hurting you. I am not saying these things flippantly, it’s bloody hard realising life has changed, but for Mum’s own sake she needs to think about how it is affecting her, physically & mentally. It’s fine to be pissed off, but she needs to look after herself. Hope she is offered something very soon, she will be surprised, drugs can help a lot, not all of them are bad. Tracey xxx

1 Like

There are some good drugs which help with symptoms.

Not everyone has had side effects.

For example I take amitriptyline for nerve pain. I think it is a brilliant drug. I take 75mg at night and have done for 17 years! Those particular pains were in my bum cheeks and the rear of my thighs. It felt like sitting on broken glass.

Another good drug for some, is baclofen. It eases spasms and tightness.

And depending on the type of MS, your mum could try desease modifying drugs, which slow progression and disability.

Following a generally healthy diet is good for everyone, so that will help.

Other than all this, get your mum to ring her MS nurse for advice, yeh?

Pollsx

hi lucy rose

is your mum on the Best Bet Diet?

i tried it when i was first diagnosed but it was awful.

no bread, no dairy, no this, that or the other.

i gave it up when my son told me off for losing too much weight too quickly.

try to talk her into giving it up too.

the bowel and bladder foundation run clinics in most towns.

they are excellent and make it seem normal.

i self catheterise, take betmiga (brilliant drug for urinary incontinence) and buy tena lady pads.

i understand that your mum will want to handle her ms her way though.

one of the best things i’ve done is to learn mindfulness meditation.

a brilliant tool for pain relief.

also i go to trafford ms therapy centre for Hyper Barric Oxygen Therapy.

6 of us sit in a decompression chamber wearing a mask hooked up to pure oxygen tanks.

it’s a really friendly place and we have a lot of silliness with our coffee and cakes!

look for the nearest one to you and go along with your mum because lots of carers join in with us.

carole x

Hi Lucy,

Firstly, I’m so sorry to hear that your Mum’s been diagnosed with MS - can I ask which type is it? Depending on what she’s been diagnosed with will decide on the treatment that she may be offered - there are many Disease Modifying Therapies out there for RRMS, but none as yet for progressive MS (but research is happening all the time so fingers crossed for the future). I would encourage both you and your Mum to investigate what’s currently licenced in this country, as there may well be one that suits her, and she may not suffer many of the listed side effects. It’s a game of roulette, but you’ve got to play to get the pay out, I guess. Speak with an MS Nurse, as they’ll have a lot of invaluable knowledge of other therapies, like CBT, mindfulness and physio, which will help with the mental and physical symptoms as your Mum learns to cope with this bloody awful condition.

I understand how you feel, as seeing someone you love and that you’re close with suffer with MS is so difficult to endure, especially if you don’t know what to do to help. When my Mum was diagnosed, I really struggled to deal with it because I was so young (I was about fourteen or fifteen when she was diagnosed with RRMS, which soon became progressive) and I didn’t know or understand anything about MS, so it was incredibly confusing and painful. Looking back, I don’t think I dealt with it at all until well into my twenties, and even at thirty now I struggle.

I think what’s key to mention here is to ensure that you look after yourself at this time - I know this sounds selfish and counterproductive but believe me, if I’d looked after myself it would have made things much easier! If you’re in a good way then you can help your Mum simply by being there and by being her daughter. You could help her do some research into drugs and perhaps clinical trials if she feels like that would be an option? If she does then great, and her neurologist can certainly point her in the right direction. Taking an interest and showing support in this way I hope will help her in a way that’s helpful and proactive.

As for progression and memory, this just depends on person to person. In my Mum’s case, her memory is still sharp as a tack - she gets a bit foggy sometimes, but she certainly knows what’s what! That said, the progression of her disease has been the kicker and it’s really screwed her. However, her case is atypical and not at all common, so please don’t use her as a benchmark!

Find support where you can and don’t be afraid to talk about your Mum’s condition with friends and family. I know I’ve just rocked up here all new and stuff, but if you would like to talk to someone who’s been in your position (and still is), then I’m more than happy to chat - just drop me a message. I completely get what you mean when you say that you feel like you’re losing your Mum, and you’re not alone.

I hope this is helpful - it feels like a bit of a ramble! Take care both of you.

Thank you so much for your recommendation and advice Carole, it sounds right up my mum’s street!