MS

[Anxious24]

can barely walk
am incontinent
41
my life is miserable
I pray to not wake up

Sounds very difficult, Op. My DH has ms so I do know a little about the awfulness of this illness. Have you family and friends you can speak to? What support do you have?

what treatment are you on? Have you seen a neurologist recently. There are much better treatments available now.

I have MS. So I get it OP.

I’m on tysabri

I’ve had it less than a year. Already can’t walk more than few mins before leg won’t work so drag it along and trip up. And urine incontinence. I’d love to be able to wear normal underwear but live in tena pants

Oh @Anxious24I’m so sorry, why a crap illness to have.
I’ve got chronic stuff too but not with such deterioration.
Are you able to take any pleasure from any activities or experiences?
Much love.

Very little. Because I just keep thinking a year ago I was fine. Much older people walk past me. And I’m self conscious about incontinence. Feel it smells and I can’t continuously change for every little leak

Fully Understand those feelings, OP. My own stress incontinence (& my DM’s dementia related) is nothing quite so serious but it’s the worry factor as much as anything; can you get recommendations through MS clinics / groups on the best protection? Might it be easier to change pads rather than pants when you’re out - or even wear pants in the pads & take them out when damp to get to the fresher pants?! (DM also has absorbent sheets, dark clothing & plenty of nice smelling sprays).

FWIW I grieved my old life of a career, travel, independence, excitement , being slim(!) and so on, for many years. It’s been 12 now and I still want to shout at younger, healthier women when I see them out, to cherish their youth & health, to justify myself & my apparent lazy fatness.
I still feel inadequate, unaccepting of my diagnoses, and angry sometimes.

You deserve something to help you feel better with your situation; is it here anyone who can support you?
Sleep well.

@Anxious24 I had Tysabri then Alemtuzemab. Recently relapsed after 10
years and they have put me on Ublitiximab. I wanted Alemtuzemab again but they said things have moved on since then. So maybe ask for something else.

I have MS, are you in a local support group?

My DD was diagnosed with recurring/remitting MS at 17, right before her A levels, after years of unexplained pain. Fortunately other than fatigue the pain is not constant and she can lead a full life away at university. Of course when she was told we both thought it meant she would end up in a wheelchair, but hopefully with medication and any new breakthroughs that is not her fate.
I’m sorry OP. It’s devastating. I wish you well.

Incontinence is so bad that pads do not hold it. Make myself go to the toilet every 2 hours. I’ve just been to toilet yet on way back to bed have wet myself. Tried as much as possible to fully empty. Other times I’ll want to go to toilet get few seconds notice and just wet everywhere. If I was 80 I could accept it better but not now

Speak to your MS nurses as soon as you can. There are other ways to manage incontinence other than just pads.

I’m so sorry you are having such a tough time. I’ve just sent you a PM.

I’ve got medication for the incontinence
I tried to walk the other day. After a very short distance I was dragging my leg. So I basically now stay at home. I can get around at home. And I sleep a lot praying not to wake up before I get to sleep

@Anxious24 huge hugs 🤗
There is hope. Please follow up with suggestions from others. You do not deserve this & there is help out there.

Can you speak to the MS charity or ask for a continence referral. Maybe they could try catheterisation. Stay strong and start exploring other advice / support

I have MS and have bouts of incontinence. You need to speak to your MS Nurse and see a urologist.

With walking and mobility issues, I find that if I stop exercising I get worse. You need to keep a positive mindset and keep moving as much as you can. It’s true what they say - use it or lose it.

Def Speak to the MS team about the incontinence. As a PP said, there are other ways of managing it rather than pads. Intermittent catheterisation can be life changing, and there are other systems available.

How you getting on on the new drug? I had Lemtrada (same drug you had, just easier to spell) and have now just experienced my first relapse in 15 years 🥲

Working myself up to take the last dose of 500 mg steroids of my 5 day course, I’ve hardly slept or ate. It’s been horrific.

@Luckystar67ive only had one dose. But relapsed again. With pain for the first time ever. So not overly optimistic about it. But I’ve agreed to carry on for now. Awaiting results of MRI..Trying to get booked in for the infusion is a ball ache though.

I don’t bother with steroids unless I have too. I have no issue talking tablets but they are just vile and the side effects outweigh the benefits.

I had to this time, I could barely type or walk at all. They have improved those symptoms immensely the last few days.

@Anxious24 do you suffer with night incontinence at all? I’ve found Desmopressin very good.

Yes incontinence night and day