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Please tell me life is still possible

Hi all

I’ve had my scan results, just my neck, all OK. However, because of all the neurological symptoms I’ve been experiencing in the past 6 weeks, I’ve been referred to see a neurologist. Luckily, I will only have to wait until a week on Saturday as I managed to get a private appointment. Having said that, I have no doubts that what is happening to me indicates ‘this’ one thing, so all that’s ahead is just to confirm my worst fears…

Please please tell me, that after you were diagnosed, you were able to lead normal life for some time, you were able to laugh with your husband, have plans and dreams, and managed to work, please tell me it all doesn’t have to fall apart and make us totally ill, I want some more good years, I am only 37, I don’t want to think there is nothing else and my life is over. I am in such a state at the moment

Can you share some positive stories that life can still go on

xxx

Positive is the only way to go.

The condition is crap and the processes and changes are not brilliant BUT whilst I was diagnosed in 1991 I was still skiing in 2006 and working until Sept 2010.

Your life will change but by no means is it over.

You may find that your goalposts slide around a bit and things, views & opinions that you have now will change according to circumstances. Whilst I am not a big fan of MS I would say that you can still have a brilliant time , just a bit different from your initial plans.

I had decided that I would never travel abroad again in 2010 but I am now planning a small safari trip in Jan 2016. One of the benefits of my MS is that I am much better at making most of opportunities and enjoying the good stuff.

Good luck with enjoying the good bits and remember that you can share some of the not so good bits here and know that you will be listened too.

All the best Mick

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Margaret, you’re running full speed ahead here. Slow down, wait and see what the neurologist has to say. There are many many other conditions which can cause similar, or even the same, symptoms as MS, so don’t jump to conclusions. Try to avoid self-diagnosing, it’s not a good idea, after all, that’s the doctor’s job! And try to avoid googling, not easy I know, but you may alarm yourself unnecessarily.

I’m sure some other members of this forum will come along with words of wisdom. We’ve nearly all been in the position you are now in and know only too well how worrying a time it is.

Hold in there, and good luck at the appointment.

Ben

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Hi Mick

Thank you for your kind words, you made me smile, I know positivity is a must, and like my husbands says ( he is still in denial though and thinks it is something else…), I can’t live my life thinking about being in a wheelchair all the time, it might not be that bad and I must hope it will not be.

I am impressed with your travel plans, Safari sounds exciting ( things cannot be that bad if after all this time you can still do that), it’s also encouraging you’d managed to work for so many years, that’s what I need:-)

Although, to start with, this forum made me diagnose myself ( who needs doctors for that…) so really, it would have saved me weeks of worry if I hadn’t found it, I think it is a great place for people like us, and there is so much strength and understanding coming from here, it’s amazing. I will definitely be on here every day, sharing my good and not so good stories.

At the moment it’s just pins and needles that come and go, and the stupid numbness that wakes me up at night but always goes, little light headiness, all liveable with, so not so bad but wo knows what’s next.

xxx

Thank you Ben, I would like to but impossible in my case… I passed the stage of thinking or hoping it might be something else, this is all escalating, just too many things at once. BUT, we will see… I will keep on posting x

Hello Margaret. How are yer ? Of course there’s life after dx. Denigh everything, and just do what you do till you can’t. I’m 43, know nothing, just winging it. Bits go dead, and come back. Some don’t. But I know what it is ! Haven’t felt my hands fully in years. Don’t paint so much now. Still laughing though, dancing in the rain. Andy. (And now more sensible answers…)

Does life go on? Yes, it does. I was dx at about your age, about 15 years ago. And yes, laughing, planning and dreaming have continued (as did work for about 7 years, most of them full-time). I don’t work any more, but the years are still good ones. We are just back from a long holiday in the US. If someone had told me 15 years ago that I would be able to do that in 2015, and be able to get around as much as I managed to (with hiking poles, admittedly, but under my own steam, still) I would have been very pleased to hear it. As a wise neurologist said to me when I was dx, ‘Don’t go home and widen the doors just yet.’

In know, I know - getting about with hiking poles sounds ghastly to a fit and healthy 37-year-old. It is worth adding, however, that I have friends who have had MS for as long as I and whose mobility is miles better than mine: my MS has been aggressive from the start, but many people’s condition takes a gentler course.

So don’t despair. And, as others have rightly said, you might suspect that you might have MS, but that doesn’t mean you are right. Just take it steadily. You’ll have plenty of time to have MS if that’s what you have. Don’t be in a rush the join the club that no one wants to be in, but be reassured that, if your suspicions turn out to be well-founded, that will just be bad news, not catastrophic news.

Alison

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Thank you Alison, your words mean a lot to me and you have made me cry, good cry though:-) It’s just amazing how total strangers can be so supportive and understanding, just because they go through similar things. I know I am fresh to this but there is too much going on to somehow turn out to be something else, my GP really didn’t make me feel like it can be soo many other things. Of course, he was professional and said that I need to be seen by a specialist, he can’t tell me what ‘it’ is, but really, didn’t sound like he sees so many cases like that which are ‘nothing’. Anyway, I don’t think my husband will be able to take it all, by the looks of it, and although he says he will, I just don’t believe it. Maybe, he just needs to go through the denial stage and it’s how he deals with, he still thinks it won’t be ‘that’ and doesn’t want to listen about my new symptoms, he thinks I am crazy to have diagnosed myself online already, but I know deep down, cry!!!

To be fair Margaret, your average GP doesn’t know much about MS at all. I have heard that most GPs will only have one or two cases on their list in a working lifetime - it not a very common condition. Of course, yours might have a particular interest in the subject and an unusually good understanding of it (in which case, lucky you if you do turn out to have MS - an actively interested GP is worth his/her weight in gold). But most of them really don’t have much experience of these matters, beyond a half-remembered lecture in an under-ventilated lecture hall on a hung-over wet Wednesday morning 20 years ago. They are called General Practitioners for a good reason - it isn’t just professional modesty or medical protocol that causes them to defer to hospital specialists when a hospital specialist opinion is required.

If he’s telling you not to jump your fences until you come to them, I completely agree with him. And the same goes for assuming that you know how people (spouses, for instance) will react before they have a chance to show what they’re made of.

Margaret, you are dealing with this your way and he is dealing with it in his way. You are different people, so that’s OK. You are both worried and you both wish that this threat of looming trouble would evaporate. Please do not feel unsupported because his responses to the threat of trouble are different from yours. This is all tough on you both, I’m afraid.

Thank you for your kind comments, by the way.

Alison

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