Facing my Fears

Hi

I was diagnosed 12 mths ago with relapsing remitting MS.However I am starting to get really concerned that I don’t seem to recover from my relapses.How is it decided which type of MS you have ?

My panic mode is starting to set in.Over the last three years I had a number of visual episodes leaving me with very poor vision in my left eye and reduced vision in my right.Last November I had balance issues and lost feeling in my left leg my foots still totally numb and I need to use a stick for stability.Then in August I had problems with my leg again and bladder control which still hasnt completely resolved despite steroids so I am self catheterising three times a day.I have a four month old baby so the pregnancy may have effected things but we are keen to add to our family however if my disability is going to progress at this rate it might not be sensible.

What do you think ?

Ellie xx

Hi Ellie and a big welcome to the PPMS board…

Well hon it’s very difficult to know what to say to you. It is possible that you have Secondary Progressive MS (SPMS). That is when someone with RRMS stops having marked relapses and gets general progression. Now you might think that a bit strange as you were only dx with RRMS a year ago… but it does happen. Sometimes people have had such mild relapses over a period of time (even years) that they don’t realise they have MS… just periods of feeling tired, aches and pains etc… but not enough to even see a GP let alone a neuro.

I know of people on this board who have been dx SPMS on first seeing a neuro. On other hand, as you say, it might be PPMS.

People often think of PPMS as being the ‘worse type of MS’, and when it is aggressive there is no doubt that it can be very disabling. However the majority of people with PPMS have a slower progressing MS, and some people with RRMS can be more disabled. So as always with MS, it is very much different for every single person.

Also, just because your MS seems to have progressed quite quickly so far, nobody can say whether that rate of progression will continue. MS is so unpredictable that’s it’s impossible to say. It’s why we always say ‘one day at a time’… simply because there is no way you can predict how quickly your MS might progress or in what way it will affect you.

It’s impossible to predict the future. That sounds pretty alarming… until you realise that actually it’s the same for everyone on the planet. Nobody knows whether they will even be alive tomorrow, or disabled, or anything. With MS as with any chronic condition it is brought home to us in a way that we can’t ignore. But if you think about it, it is the same for anyone.

In terms of deciding which type you have, the neuro will be monitoring your progession, relapses, recovery from relapses etc. So it can take some time. Important to remember however that MS is MS and the ‘type’ can wait until the neuro is sure.

In terms of you having another baby, this is something that only you and your partner can decide. I would say that it’s probably best to wait until you have more info from the neuro. Also you will need to think about what help you would have with another baby. Many women with MS do have children so it’s certainly not out of the question. Your baby is still very young, so give yourself some time before you make any decisions about more children.

Using the ‘one day at a time’ mantra, don’t go jumping ahead of your MS and thinking that it’s PPMS. Wait and see what the neuro says… after all, they are the experts! In the meantime, you are more than welcome on this board for advice, rants, laughs, or a good cry.

I’m sorry you have been having such a rough time of it… and with a baby to care for! Take good care of yourself, and your baby, and, for now, let tomorrow take care of itself.

Pat x

hi ellie

think pat summed it up very well

i was dx 2yr ago and found this site brilliant to ask people who know what i’m going through

or to have moan on bad days

hope goes well and remember there’s people who experienced same things your feeling

steve

Pat and Steve

Thanks for your replies one day at a time seems to be my mantra .

Ellie x