Mum's ms worsening, worried

Caring for someone with MS
1

Hi

My Mum has primary progressive ms. She has carers 4 times a day and she’s 64. I used to be in denial that her health would get any worse, I told myself that happens other people, but Mum wouldn’t be like that.

Unfortunately as time went on her mobility got worse. 10 years ago she used a stick occasionally and could walk a reasonable distance, such as around town.

But now she can’t really walk very far, and would use a rollator if she walking outside. She’d only walk as far as the car now really. Last summer she went for a few walks, only a very short distance along the street. There’s a slight slope which she found very hard to walk up again. She had to sit and rest on her 4 wheel rollator as its got a little seat.

She’s had an increasing number of falls over the last few years. This seems to have stabilised with only a few falls in more recent months (:crossed_fingers:hoping not to jinx anything)

Over the last few years i noticed her speech getting worse, and sometimes I find it difficult to understand what she’s saying.

The biggest worry is the fatigue. Sometimes the Carers tell me that she’s very tired and confused in the mornings. But she’s always fine then by lunchtime.

Yesterday I got a call as she’d been taken to hospital. When the morning carer was out, she found Mum sitting on the commode, bent forward. She said Mum couldn’t communicate and was very pale and shaky. She rang an ambulance. The paramedics noticed she seemed confused but this cleared up as the day went on. They checked Mum over in hospital, bloods, urine, ecg, and everything came back clear.

The hospital doctor said he thought it must be the ms. He asked as well if she’s stressed at all, as he thought stress can show up as those sort of physical symptoms.

Has anyone come across this with ms? I’ve rung the ms nurse but their message says to allow 2 days for a call back as they’re short staffed

Thankfully she seems fine today, although a little tired but nothing out of the ordinary

2

I have had PPMS since 1989, in September 2024 I took the the drug Cladribine as a trial drug, which I believe will now be available next month,

It was the worse thing I ever did, it had a massive effect on my Mobility.

3

Sorry to hear that Sara :pensive_face: It must’ve been devastating to have got a new medication and been full of hope that it would help you, for you to have ended up worse off

4

Because they said that you can stop at any time you possibly would think that you can revert back to how you were before taking the drug, but it is such a strong drug that it stays in your system for at least 12 months. This bit they keep from you.

5

As in my reply under another heading, Cladribine has been in use since 2017 and general trials finished way before that. There is a current trial but it’s only to see if it helps people to retain use of arms and hands specifically.

I haven’t looked to see if in the 8 years since it started being used there have been any other reports of decreased mobility but you might know of some?

6

Hi, many thanks for that. So the drug Cladribine that is now licensed is the one that finished the trials back in 2017, so do I take it that prior to this people were able to obtain it on prescription?

7

Hi there, It wouldn’t have been prescribed for MS unless trials had been completed and it had been approved/ licensed.

So far as I know it’s not used more generally I.e as a treatment for other conditions except some cancers .

8

If your mum has ppms like me and found slumped forward head near chest this is a very bad position as the spinal cord where a lot of the problems are with ppms is completely compromised .I am not a medic but recently learnt this so please talk to doctors .This position head slumped on chest can cause problems for everyone if it lasts for hours .

1 Like
9

And ms society what do you know about this ?