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I’ve got MS and it’s scary

Just been diagnosed with MS and the uncertainty is very scary. My mind is filled with a picture of a painful decline towards being wheelchair bound and in constant pain. But I was reading BigBear’s thread and all your kind responses and it did to some extent lessen my fears and made me realise I can still live a full life (hopefully to a large extent). I should try to get over myself and try to learn to cope with developments as they happen rather than moping and getting depressed in advance of them. Thank you forum you are really helping a scared and confused newbie.

hi bonbon

i was very blase about it when first diagnosed.

at least the first 6 years were good.

now they are not exactly bad but neither are they exactly good.

my decline is following it’s own path.

10 years in october since ms gatecrashed my life.

refuse to be down hearted.

refuse to be prevented doing something that you really want to do.

see the funny side of stuff - even falls can be funny after the event!

sick sense of humour helps somewhat.

keep coming onto this forum.

you’ll survive and you’ll be fine.

carole x

Hello BonBon1, You feel how you want to feel and don’t let anyone tell you any different. You’ve just been told that you’ve got MS and it’s perfectly natural to feel confused/sad/angry/scared/overwhelmed. The five stages of grief - that I saw on The Simpsons, after Homer had eaten a poisonous part of a blowfish - made complete sense to me and I’d had MS for about twenty years when I found out about it. https://multiplesclerosis.net/living-with-ms/my-ms-stages/ I’ve reached the conclusion that I’ve had two lives - My first life was without MS and my second life is with MS. They’re both different but well worth it. Take care.

Hello

Don’t be in a rush to ‘accept’ having MS. Allow yourself a bit of ‘bugger it’ time. Some healthy ‘why me?’ And a bit of ‘it’s not buggering well fair’ time.

The chances are you’ll be well, not disabled, look able bodied, able to work (lucky you!), live well, and be happy for a good long time.

Many of us who you come across here have had a long time to get used to it. Personally, I was ok in limbo for 5 years, (I denied relapses were happening, even to myself). I was alright for a good 5 more years after diagnosis. I was not too bad for a further 5 years, just becoming slowly more disabled. And for the last 6+ years, I’ve been really quite disabled.

But I’ve had some seriously nasty relapses. Without the protection of DMDs.

You live in a totally different world to where we were 20 years ago. There weren’t even more than a handful of MS nurses then, for the whole country. There were no DMDs for relapsing remitting MS even, until 2002, then there were 4, now there are about 14. There were few facilities and services for neurological disorders. I now have a rehab specialist, regular physiotherapy, an MS nurse, bowel and bladder services, MRIs when needed. All things/people in short supply 20 years ago.

Uncertainty happens to everyone, whether they have MS or not. Don’t feel guilty for being scared. It’s a scary diagnosis. But with luck, decent drugs and a good MS nurse, you should be OK. Life happens to us all. And as What’s it all about says, there’s life pre and life post MS diagnosis. Just make it as good as you can. And we’ll always be here when you have questions and worries.

Sue

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Thanks for all your helpful comments. I did get really down when I was had my first symptoms some years ago but that was partly because my GP said it would be best to go off my restless legs pills (Pramipexole) just in case it was causing it or making it worse. I was a bit of a basket case then, bad RLS and the new symptoms (pre steroid treatment) I cried every night and drank too much wine. Decided to go back on RLS tablets and had some steroid treatment after CIS diagnosis. Things got better after that. I just don’t want to live in that space again if I can help it. So for my own sake I’m determined to be as realistically upbeat as I can and face the difficulties as they arise instead of crying every night and drinking too much wine. I can’t promise I won’t get really down when the symptoms worsen but this forum will help me cope (I hope). I’ll come on and do my ranting then. Thanks again.

yes BB

that rings a bell, heavy drinking (which i still do but not as often).

just remember “it’s life jim but not as we know it”.

your life is precious.

Hi again

Lots of us have spent too many years drinking too much to get past the RLS stage of a non diagnosis. Or just drinking too much because we drank too much!!

And some of us still drink quite a lot.

But feel free to treat us as anti-drinking methods of coping with your new diagnosis.

And btw, welcome. None of us want to be qualified for the forum, but now we are, there’s no getting rid of us.

Sue

Hi BonBon01

I think it’s pretty normal at this stage to be scared and upset. Be kind to yourself while you figure out what it all means - and take time to work out your approach to decisions re. treatments, symptom management and life style choices arising from this diagnosis. And don’t be too cross with yourself if you need a little irrational comfort along the way - I certainly cried into a glass of wine (or two), ate chocolate, punched things, pushed my boyfriend away and smothered my cat in tearful cuddles. Two years later and things are feeling much brighter and more manageable (although to be fair the wine, chocolate, cat cuddles and boxing remain!).

We are the club that no one wants to join- but we are here if you need us.

Good luck with it all. Xx

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I am a little confused how to process from the diagnosis. My consultant said he would see me again on NHS in 3 months but in the letter to my GP he mentioned MS Nurses. He didn’t mention them at all in our consultation. I don’t know how, when or if I should contact them. Any advice?

Try phoning your neurologists secretary and ask him/her.

Sue

maybe your gp could contact your neuro.

You could do an internet search for MS Specialist Nurse in your county. Or contact the MS Society.

Thanks. Good suggestions I’ll try them.