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Going downhill

Hey everyone…

Although still not formally dx with PPMS, it’s highly likely I have it.

I’ve had symptoms for the last 5 years, but the last 2/3 ish months I seem to be going downhill much faster! My legs are getting worse, (heart and breathlessness problems put in another post) plus other bits…

I know everyone is differnet and there is no real answer to this but I am curious to know other peoples progression… But what I want to ask is have you had a sudden ( and I mean over a few months, so not that suddenly) decline in your legs, where they were sort of on a steadyishh, much slower decline before - if thats makes sense?? Or did your legs slowly get worse over a long time?

Thye distance I can walk is dramatically shortening, the stiffness and aches, and spasms are all getting much worse. My neuro has just started me on baclofen, only took the first one yesterday so wont know the benefits yet. But I am worried I am on a big slide heading to sticks/chair…

I’ve just been on holiday and struggled a LOT!!! My husband wanted me to hire a scooter but I was pig headed and struggled on…

I think the pig headedness is because I know if am walking round the house, walking from car to a shop, or car to work I feel ok… and I say I’m fine and I don’t need any aids… but then if I walk a bit further or whilst I am working (I am a studio photographer and struggling, that bit writen in another post in EL) I do struggle, need to hold on to my husbands hand to help me…

Am I in denial!!! :frowning:

Hi Jules,

You sound like a carbon copy of me! My walking/balance has declined now over the last few months. I have a F.E.S machine now it helps a little! Worth asking to be refered to the clinic by GP. I’m starting Baclofen again today been back to GP he thinks worth another try (Tried earlier in year relaxed me too much! ) I walk with a stick but now feel I need crutch type sticks now and maybe two? I think if you read other peoples stories on this site if affects most people the same but in the end we have to give in to help of aids? I get scared of falling over, last thing I need is a broken limb!

Take Care

Chris

Take a look at ldn and see if you think it can help.

www.ldnresearchtrust.org

Hi Jules, My walking has gone up and down over months at a time… but in general it has gone steadily down. I’m still walking around my flat without stick (except on bad days when I need stick) but any distance has become impossible… and I do use a scooter or walker (though even walker is too hard for any distance).

That sounds depressing I know. The thing is once I got my head round it and got myself a scooter life suddenly became so much easier. I could go off on my own round the shops and had my independence back. Can’t imagine life without it now.

That doesn’t mean I’ve given up on walking. Have to keep the legs working, so I walk up and down the side-street where I live or up and down corridor outside my flat, using stick. Sometimes I can’t manage it but then suddenly I can again.

And it doesn’t mean your legs will get as bad as mine. Remember it’s different for all of us. What I’m saying is, once it becomes a struggle… has an impact on your life… then it’s worth trying out a stick and maybe a scooter. It’s not giving in. It’s just being pragmatic.

I would also say that my legs did decline quite rapidly over about a year, but I don’t think they’ve declined much over the last year or so. So a decline does not mean it will continue.

Also the baclofen might help so you never know and check out ldn. AND ask you GP to refer you for physio which is a great help.

Pat x

Hi Jules

I have had ppms for a long time now, and please remember that everyone’s ms is different.

Mine started off with numb patches on my legs, which quite rapidly increased, legs became stiff and painful so, although I didn’t want to (cos pride hurts), I relented and used sticks. From that it was a slow decline where I went to elbow crutches, and cos my children were tiny, I had to use a wheelchair when outside. I am talking years here, not months, but I now have a powerchair and have to use it inside and out, but there is nothing to say that your’s will progress. I am afraid to say we are all in the “lap of the gods”, the neuro did tell me once that sometimes it can plateau and stay without progression. The one thing that I will say is, although it took a lot of persuasion from my neuro, gp and family, when I did relent and use aids, I got my independence back, and mentally made me feel better.

I do also take baclofen, it can take a little while to get the dosage right, and also I take amytripyline, both of which help.

Hope this helps, take care

Pam.