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Soo Scared for future

Was diagnosed in 2007 and been lucky not to have much symptoms and been put on treatment quite quickly. I have recently had my first Mri scan since diagnosis and it has shown many more Leisions and a large active one. I was shocked by this discovery and secretly due to last of symptoms had thought they had got it wrong. Spoke to Ms nurse who did give reassurance that no leisons were found in cerebellum or spinal chord which she said was good??? However she said her concern for me was the affect in 10 years time as leisons keep forming in same place. I asked her to elaborate on where and effect and she was cage. I’m nit freaking out that I’m gonna have communication issues. I can’t sleep feel I’m grieving Fir my life I’m now thinking I’m feeling things tht I can’t get words out am I km giving this. I knw should live Fir today but I’m almost stunted by fear I have 2 young kids. I’m getting in a right state. Seriously panicking all I’m doing is crying this is putting strain on my marriage. I need to sleep but scared to. Few like I’ve been diagnosed all over again.

Anyone else awake

Hello there,I’m awake…as usual.I’ve read your post and really feel for you.My situation is totally different and 13 years in constant pain in my feet and not being able to walk are my main problems.All I can say to try and help is that in your very busy life you should try and find a bit of time that you can devote to doing something you like doing and are good at. Could be anything,but it’ll distract you and make you realise that you are still in there.

Dunno if that makes any sense.I don’t mean playing the drums at eff o’clock in the morning,but something that will fit into your routine.If you’re still there,it’s your turn to tell me that I’m talking rubbish, or is there something to it.

Steve

Thanks for ur reply fellow insomniac lol I dud reply back no idea where it’s gone. It’s all changed since I used to come on here lol

YEAH,THE ADVANCE OF TECHNOLOGY.Can’t help with your missing worms,there somewhere,but they want to hide.

Steve

Worms? Is tht what you call them. I’m a bit of a dumb as when comes to all things technical lol. Git my eyes nip but can’t sleep what is worth that. I’m tierd y nit just sleep grrr

Oh think I worked out I sent a private message rather than post on here.

OK,I’ll have a butchers,but I’ll be heading to the land of nod soon.Worms are a silly typo I did for words.

Hi lorrai hope you managed to get some sleep.

I was told by my neuro that with MS it can be weird. Some people with loads of big lesions hardly ever get symptoms and some with hardly any are disabled. Its NOT necessarily a lesion that makes us disabled, a state of mind plays a part too and the way we live with it and yes where the lesions are located set the path too…

Your nurse needs a kick in the backside talking to you that way, they should be always positive with their patients.

You have had MS now for 7 years and seemed to have coped well. Has this new MRI and what she said now made you feel hopeless? I hope not.

Ten years is a long time, so many things can happen you can even look forward to. Your children growing up, they will be 10 years older…will they be going to secondary school by then?

Because of this information you are now grieving for your life, dont hun, who knows in 10 years time there will be a cure for MS or your treatment might simply stop any new lesions forming…you dont know.

From what i understand you have been good so far and the results freaked you out as you thought you would have had no new lesions because you felt so much better. Like I said some people with lots of lesions have hardly any symptoms and some with one lesion can be disabled so although you have new lesions, they are not affecting your neurological pathways…because of where they are. Yes if you continue to have lesions form in the same place over time, (10 years), they may start to affect you…but like i said TEN YEARS IS A LONG TIME AWAY ok…

So dry your tears, get yourself back into a good healthy routine, and make sure you sleep. Sleep is the one thing we do need without a doubt.

I am like Wobbly my feet hurt all the time and my legs go spastic, I am 63. I dont have kids but i do have my hobby which is my little bantam chickens and they keep me active. I do everything i have to do in the morning, and then rest. I am always asleep by 8pm and if i wake up which i do i NEVER TURN on a laptop, i just take my one diazepam (2mg) and I go back to sleep until about 4.30/5am. As soon as you turn on a laptop your awake lol…

I pace myself every day.

Now try and stop worrying you have a load of living to do…the lesions will take care of themselves…dry your eyes and just enjoy your family and live a good life. Big hugs…xxxxxxxxx GG63.

Aww thanks golden girl ur right in everything you say I need to get a grip and I defo need sleep in exhausted always been a bit worried about sleeping tablets but I think might try those kalms u can buy will go to Hoyland and barret today. If they don’t work I’ll go to doctor I’ve had so much stress last 6 month (namely from my cow of a sister I’ve been crying lots doing might at situ) that hasn’t helped hair is falling out as well (I gave hunners so not concerned bout that lol) I’ve cut my sister out now as she brings me too much stress and one of the k at things she said to me was I make up my ms when it suits me and to then get this news it’s upset me more. Anyho giving my life story here but clearly my lack of sleep and stress is not helping me. Thanks for ur advice xx

Ha ha Steve thought that was computer speak Fir lost email or something. I. The Queen of typos lol xxx

Hi hun, have answered your private message. Sending you big hugs. xxxx

Hi Lorrai,

It’s scary isn’t it? I’ve been diagnosed 2 years and decided early on, that for the sake of my sanity, I had to come to terms with the fact I might get worse.

I decided that although I could be worse in 10 years time, I had 2 choices. I could spend those 10 years worrying and feeling miserable or I could try and enjoy them. Either way I’d still be as disabled (or not) at the end, so I may as well spend them trying to enjoy myself.

It doesn’t always work but then I guess everyone’s allowed the odd wobble!

Thanks smuggler Yeh ur right I’m feeling sorry for myself I need to snap out of it I’m being ridiculous. Thanks for ur reply xx

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Sorry tht was shuffler lol my minds going already lol

Hey, don’t be so harsh on yourself. There’s nothing ridiculous about being scared when you have a horrible condition.

Like I say, everyone’s allowed a wobble. I don’t think it matters how long in to a diagnosis someone is.

Smuggler - sounds so much better! I may have to change!

Ha ha smuggler is defo a better name I recommend a change lol xx