I don’t often post anything on the site but I am feeling a little anxious at the moment and would love it if any of you kind people could help me out at all.
I was diagnosed with MS in January 2013 after having an episode of numbness in July 2012 which lasted around 1 month. I had previously had numb symptoms around 4 years previous to this.
I have been really lucky and had no signs of any ms issues after around September 2012.
Does anyone have any idea of what I might have to expect. Do you think it may come around every four years?? Can it just stop completely? I am so confused a little bit of help would be great.
Well, Lainey, it would be wonderful if we all had the same conditions - but we dont!
Your 2012 numbness could be considered as your first relapse, If there is a second one, it will happen when it happens.
Sorry, that is not a lot of use to you.
What you do not do is sit around waiting for it to happen, My MS developed faster, so it is no use telling you. Other people here can go 5-6 years between relapses.
All you can do is to carry on. Do what you want to do while you can still do it - there may come a time when you will wish that you had, and that time could be 2 years or 20 years away.
Do you want the truth? If not, don’t read any further. I’ve written this post but I feel mean posting it, so I thought I’d give you a warning.
I’m afraid I can’t be of any help in predicting the course of your disease. No-one can. That’s the essence of MS - you can never know what is going to happen to you.
You have been given a diagnosis for a disease which is totally unpredictable. In five years, you might be absolutely fine or you might be having problems with one of almost any of your bodily functions, or with more than one. The problems might be minor or serious. When I was diagnosed (fifteen years ago), I was told that the first 10 years after diagnosis predict how your disease will go from then on. That turned out not to be true - I’ve deteriorated more over the last 5 years than I did over the first 10.
Thank you for your comments I thought really that would be the case and have be living live to the full whilst I can. I guess its just still so new to me that I am unsure what will or could happen?!!
The only predictor we have of how anyone’s MS is going to behave in future is how it’s been in the past - although it’s no guarantee.
Relapse frequency tends to be highest in the early years - i.e. around the time of diagnosis. No huge surprises there - most people are diagnosed when their disease is active, not when it isn’t.
If you have so far been going years between relapses, it is unlikely, but NOT impossible that you would suddenly start having much more. The “average” pattern of the disease is that relapses die down with time, not increase. And yes, in many cases do eventually stop altogether. Unfortunately, that doesn’t mean the person has got better, and their MS gone away. It just means the nature of it has changed, and it’s characterised less by distinct episodes (relapses) and more by continual (but not always fast) deterioration.
But remember, there is no such thing as an “average” person with MS. However, I think you can take some comfort from the fact your relapses have so far been very infrequent. That doesn’t mean things can’t/won’t change, but statistically, it’s a positive indicator.
Relapses don’t run to a timetable like buses (mind you, round here, the buses don’t, either!) So a four-year gap the last time doesn’t mean that’s what you can expect again. And especially doesn’t mean you are “due for one” this year or next, because it’s getting towards four years. It doesn’t work like that!
As others have said, it will happen if it happens. There’s absolutely no way of predicting, and not much point worrying about something you can’t predict, either.
You will deal with it if or when it happens - most people do.