I’m a limbo lander at the moment & I know what I’m asking may be off the scale for someone in my position but I have crazy questions entering my head quite often. When they talk about progression and relapsing remitting becoming progressive, do they mean and does it just keep on progressing until you die or it kills you? Or are they talking about progressing to the point where you can’t walk, need a wheelchair or can’t feed yourself etc? I’m trying not to be morbid but these things keep spinning round in my head.
Hi Anon,
It just means “getting worse”. But how much worse, and how fast, varies hugely. A majority won’t EVER need a wheelchair permanently, and very few will get sick enough to die of it. Indeed, there is a school of thought that it’s not even possible to die of it, although I personally think that’s a technicality, because if you die of some complication a healthy person wouldn’t have had, it’s still down to the MS, in my opinion.
But you’re quite right, it’s disproportionate to be worrying about this, when you’re not diagnosed - and with a bit of luck, may never be. MOST people with MS will live a pretty normal lifespan, and will die of something else.
Most people diagnosed with Relapsing Remitting take years before it becomes “progressive” - and sometimes it never does (or they’ll have died of something else first). The main difference between Relapsing Remitting and Secondary Progressive is only that it stops being so episodic in nature, with acute attacks, interspersed with periods of relative recovery. It DOESN’T mean the person is shortly to become helpless, or die, or both.
Please stop frightening yourself.
Tina
Hi Anon,
It’s pretty normal to have these worries. I think the uncertainty of MS is really hard to come to terms with. However with uncertainty comes hope. I am one of those progressive folk but I know that some people with progressive can plateau and stay the same for years. I’m gonna have a Tee Shirt printed “I’m waiting for my ptateau”
Anita has said it all – progressive just means that you don’t helter skelter between awful and sort of OK. I’ve never had relapses but TBH they sound horrible. I’d rather stay as I am. With steadily worsening symptoms you have time to adjust and find ways of coping.
When you are looking down a tunnel from healthy to …… well, me it can seem pretty depressing. But it’s really not. People will know I don’t like“end up” and “wheelchair” in the same sentence. Even if the roll of the dice falls onto progressive it’s nowhere near as bad as your imagination can conjure up
Jane