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How bad will PPMS likely to get ?

I suppose Im relatively new to MS although knowing what I know now Ive had the symptoms for 15 years maybe longer. I was diagnosed February last year with RRMS but that was changed to PPMS in November last year. I understand it is progressive but over the last year my symptoms are basically the same. Can I expect a sudden change or are things likely to carry on slowly.

My symptoms are the usual fatigue, balance and dizziness issues, OAB and RLS. Other than that I`m lucky compared to what I read about what some of you are going through daily.

Any ideas appreciated.

How long is a piece of string I suppose? Who knows?

I was diagnosed RRMS May 2015 out of the blue. Apparently had it for “quite some time”, according to Neuro.

October 2016 that was changed to PPMS. My mobility has deteriorated rapidly during 2016, the second year. I now use a rollator indoors and a wheelchair outside. That seems to be my worst symptom. So far…

How bad will ppms get? Nobody knows I’m afraid. Every case is different.

I probably knew the answer already but may have overlooked something.

I have been very sporty and active throughout my life. Whether that makes a difference or not time will tell.

Just looking for a way out of this hell hole.

You are looking for answers that no one can give you I’m afraid.You want reassurance that your MS will not get that bad maybe it won’t but only time will tell but in the meantime try not to stress over how things will be,if you are ok for now then live for this time,thats all any of us can do.

I have had MS many years now and after i got over the upset of my diagnosis i told myself that i would only worry about how bad it could be IF and WHEN it got bad and thats pretty much what i have done i did not want to waste any time worrying over it and it worked.I have had some very, very bad relapses over the years too, but i deal with each one the same way and try get over them the best way i know how.I had a biggie in 2006 but previous to that i had gone 8 years with no relapse and was quite well.So try to live for the here and now if you can, its the only way really, for any of us.

J x

Ive never had a relapse yet and as I understand it with PPMS they are few and far between. You are right, Ive just got to get on with it and not worry about it until it happens.

Does annoy me when certain people make comments that there is nothing wrong with me. I appear “normal” but I would swap places any day of the week to get away from this torture.

It`s like a ticking time bomb with no clock.

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Know exactly what you mean; all I can do is quote MY MS. One attack only 46 years ago; diagnosed 44 years ago no attacks/remissions; nothing remarkable; oh! Except I had my leg amputated owing to catching MRSA in a hospital 15 years ago.

Live your life mate; yes we have not been dealt a good hand but que sera; just gotta get on with it as you say, f**k other people who do not know what it is like.

George

I’ve had the best since 1983 but even though I rely on wheelchairs, good friends and benefits, I can still enjoy my life.

As for anyone saying you look fine, you could recommend a visit to this site to see the undisputed truth. I’ve had all that nonsense and I used to say “just you wait and see”.

The fact is a positive outlook is the best medicine. I’ve had to accept a lot of limitations and medication for depression. We are in the 21st century and there is a lot of help if you want to look for it.

It’s not the end.

Best wishes, Steve.

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I am very new to all this and still in shock that I might have ms. But totally agree with your sentiment saying it is like living with a time bomb with no clock. The worst part of this is having no control over what is happening to your body.

GeorgeI you say you only have had one attack. I am new to this and don’t understand a lot about ms. What happened to you, if you don’t mind me asking when you had your attack? I am in the early stages going through tests.

Maybe easier said than done but when i was first daignosed i was always worrying about how fast it would progress until a freind told me that “worry is like a rocking horse, it gives you something to do but gets you nowhere” it’s always stuck with me. best of wishes.

Mark.

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It is what it is chuck!

MS and other neuro conditions like whatever mine is, is summat we have to learn to live with.

Give yourself lots of good quality rest, pace your activities, and never refuse help.

pollsx

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Lots of good advice. I was diagnosed PPMS 11 years ago. I posed the same question. The fact is we’re all different, and it’s unpredictable. My progression has been steady, just as I get used to how I am, I get a bit worse, I’m fortunate in that I feel well and I’m not in pain. I won’t bore you with what I can’t do.

However, one of the best pieces of advice I was given (sometimes easier said than done I know) was this -

Try not to worry too much about what MIGHT happen, because it MIGHT NOT.

I’ve tried to hold on to this, not a bad philosophy for life.

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Usually people are diagnosed to PPMS after initially been given RRMS is because they have got worse progressively over a period of a year without a relapse. If you have basically been the same then how can they diagnose you with PPMS.

If your mobility is still good I would do anything to keep it as long as possible. London are giving HSCT to people newly diagnosed with PPMS if mobility is good. If I were you I would ask for a referral to see a Dr Nicholas at Charing Cross Hospital.

You can get more information on the HSCT FOR UK facebook page.

I was diagnosed with RRMS last year. I think it is PPMS and I went to Mexico 8 months ago and am doing really well. There is a small risk of infection with HSCT but in my opinion MS without HSCT will highly likely rob you of your ability to walk amongst a lot of other things and the earlier you hit it the better especially before nerve damage sets in.

HSCT doesn’t work long term for PPMS according to the Barts blog post:

But I would agree with Moyna, that if you’re going to do it - you need the hit early before the nerve damage sets in, as nerve damage isn’t reversible - whatever label you’ve been given.

I suspect that’s why HSCT isn’t so good for PPMS - as the nerves are damaged, but no new damage is occurring, so it’s not stopping new damage, as there isn’t any, and the old damage is already in progress.

But I have no special knowledge.

And Flowerpot is right, how often have you really worried about one thing, only to have something completely different and unforeseen happen instead - so not much point worrying. Not that that’s going to stop any time soon!

Jo x

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