A Bit of a Shock

Hello one and all,

Most of you know me and that I have SPMS, well on Monday I saw my neuro (saw her 6 months previously) and believe it or not she took me aback by saying my ms had progressed in just 6 months. I thought I’d managed to cope with it all, but after she told me that my mind started working overtime. Please guys and gals bring me back to reality.

Janet

x

hi janet, i am no expert in m.s, i have symptoms which aren’t consistent with m.s. but what i can say is there are positive ways forward. for u to be told that your m.s has progressed in 6 months… i mean was this on an mri picture feedback, or in visivle ways that its affecting you? sometimes the things professionals tell us are not always in our intetest. especially if being told such news fuels a negative path. xx

Hi Janet, of course it was shock to hear those words but as long as you feel you are coping try and carry on as you are. It must be very frightening to think your ms is progressing, please try and keep strong, I will pm you Sending loads of hugs love Karen xxxx

As purple haze said was this an actual fact shown by tests or just a wild observation on the neuros part who sees you for how long at a time???

The important thing is how do you feel? You are the expert on you and you know if things are becoming more difficult for you.

Whether you hurdle or crawl over the speed humps you are still you and I am sure we can rally round behind you and help you back up from your neuros comments.

Take care

Pip

Hiya

Sorry to hear you’re feeling shocked and fed up by what your neuro has said but, as the others have said try not to worry too much. It’s how you feel that matters. In my first year of diagnosis after my 5th relapse my neuro told me that I had very severe and aggressive relapsing remitting MS. It hit me like a ton of bricks and made me feel like I wasn’t coping and that there was no light at the end of the tunnel. Once I’d had a think about it and talked it through with my mum I realised that I already knew that it was severe and aggressive, I’d just been too busy dealing with the relapses to think about the ‘label’. The fact that he’d used this term, didn’t actually make any difference to me and how I dealt with it day to day.

Try not to dwell on the label they use. It doesn’t make any difference what they call it, it’s how you feel that matters. I bet you don’t actually feel any different today than you did last week, before she’d said this to you. That’s what matters.

Sue

x

So how are you feeling today?

Pip

Hi Janet,

I have SP too and if I took objective measurements I’m sure that I could show a progression over the last 6 months but it doesn’t matter.

MS (especially S or PP) more than anything is about TODAY. It’s no good looking back because most of us have waved goodbye to the person we were. It’s no good looking forward because even with progressive there’s no certainty. I think it’s about coping with what today has to offer. Getting the right aids, trying to get your head into a positive place and just getting through the day with as much energy and joy as you can muster.

I’m sorry to sound like a happy- clappy but I really do believe it. I just found out that my daughter has gone into labour. No matter what other sh*** is going on I will probably be a grandma by this time tomorrow. MS be damned – life goes on!

Jane

Just remember no matter what the doctors say about your progress, you know before they do. However much “progression” they say you have you’re the one living with it, so you either know it’s happening beforehand or the progression actually hasn’t affected you at all. Either way, you leave the appointment no better or worse than you went in physically.

Hi, what was it that made her say that then? Have you had a new MRI for her to say such a thing?

Hope her words havent made you feel worse…but if it was me, then they most likely would. My eldest daughter tells me not to listen to doctors. But that`s not so easy eh?

luv Pollx

My thanks to you all for your replies much appreciated. I guess tbt I already knew it had/was progressing just didn’t like to hear it being said. I’ll just carry on as usual and all your support has helped no end. Today I am really, really tired, but that’s my own fault as a friend of mine took me out for the day to a lovely garden centre. Actually bought some Christmas presents, had a strolll around with my rollator, lovely coffee and scones. You are right Jane no point in lookling back, so from now on it’s onwards and upwards whatever comes, comes and I’ll just plod on…!! Life is hard at times, more so on my hubby than me, he finds it difficult to accept I can’t do things anymore, hey ho, tomorrows another day. Thanks once again to all my cyber friends for your support.

Janet

x

another week gone, and what a week. today is good, managed to get out of my chair to a standing upright position and to sit back down again without lega going into spasm and locking out. may try to get into wheelchair later for a spin… or maybe not. have a good day everyone x

posted this in the wrong bit - silly me