Forum

Newbie

I don’t know if this is right place to say I’m new on here, I was told by neuro on Monday I have MS… Can actually say I feel numb, don’t know where to turn to next! What happens next oh a thousand questions but where to start :frowning: I’ve googled MS till I’m all googled out!,

Hi Laine x So sorry to hear of your diagnoses x

You have definitely come to the right place - there are lots of lovely, knowledgeable people on here who will take time to help advise you x I’m sure you’ll hear from them soon xxx I’m pretty new here too and not diagnosed so I don’t know much about anything x just wanted to show support xxx

xxjennyxxx

Hello,

This is an ideal place to start and as im sure you have been reading and seen that any question can be asked,and the answers are from people who genuinely know about the weird things that are happening to you.

Rizzo will be on soon and give you really good advice,all I can say is I was told recently it was MS and this site is a godsend.

It is too big a thing to take in overnight and you need time to come to terms with it…go slow with information gathering.

As I say the practical help will follow from others I just wanted you to know we are out there and ask away.

Welcome aboard… its a shock but not the end of the world

Take care Pip

Hello, and welcome to the site

Even when we’re expecting it, hearing the words “multiple sclerosis” is a horrible shock You’ve come to the right place though - we really do understand.

It can take a while, but somehow or other, we make it through the shock and other crazy emotions to find that life still goes on and, actually, it’s OK! Yes, MS brings with it some unpleasant challenges, but the vast majority of us still have long, happy and fulfilled lives. Promise

Feel free to fire away with the questions. You might want to ease up on the googling though - there are some real crackpots out there!!! The best place to start is by reading some of the publications that the MS Society and the MS Trust provide for free. While you’re reading, please keep firmly in mind that MS is massively variable - you will not get everything you read about! The booklets have to cover every type of symptom, but no one gets everything, and even the things that we do get vary in severity too; many are very mild.

Two things you need to do soon: inform the DVLA that you have been diagnosed with MS (it’s a notifiable condition) and check your mortgage policy and anything else you can think of that might have critical health cover in it - MS is a claimable condition.

Take it all one step at a time. You’ll be OK.

Karen x

Thank you ladies I had a horrid night last night no sleep mind running overtime… I’m just not sure what to do next do I wait till the MS nurse gets in contact do I go back and see my GP as I think I’ve decided to start treatment as soon as I can, I was offered the injections or the monthly infusion but I said I’d wait and see how I got on with the steroids for the double vision then decide what I’d do. I feel I want to start the injections as soon as possible to try slow this down… I just want to feel better knowing I’m doing the right thing… Oh me what to do first :frowning: x

Your GP can’t really advise re the injections and infusion, commonly known as DMDs (disease modifying drugs) and isn’t involved in prescribing them either - everything goes through your MS nurse. So your MS nurse is the person to speak to. Why not give her/him a call rather than wait for them to contact you?

The best place to get info about DMDs is www.msdecisions.org.uk. It will help you to decide what’s best for you. There’s no right answer - they all come with side effects and risks and some are more effective than others, so go with what feels right for you.

Unfortunately, (as far as I know!) DMDs do not slow down current relapses - only time will do that (with a bit of help from steroids sometimes). They reduce the number of relapses that people have and the severity of the ones that they still have. They can also help to slow/delay progression. Patients on Tysabri (the infusion) sometimes find that existing symptoms improve too.

If you’ve got questions after going over the msdecisions website, then fire away - someone on here will undoubtedly be able to give their experience or some relevant information, but the decision has to be yours. It would be completely inappropriate and even dangerous for someone else to tell you what to choose - we don’t know you or your MS!

Karen x

Hi, welcome. This site is great for various reasons:

  1. There is a number of those with varying diagnosis for a varying time length
  2. There is a wealth of information both from the societies and personally so take all else from the internet with a big pinch of salt!
  3. They are a really friendly bunch on here!

The diagnosis is just the start of another of life’s adventures which all of us are part of!

Thank you I have decided to take it as it comes… Staying off the pc to start with. I have been dwelling on what might happen to me in the future, I don’t know how bad I will get but if I can stop scaring myself stupid some of the stress might go… I’m having to cope with my father dying just now he’s still hanging in there after being given 6 months to live last August when I see him I tell myself to get a grip and get on with it, I could have been given so much more bad news eh?.. Thanks again I will use the forum for asking things I may need to find out about… Everyone seems very friendly :slight_smile: x

Hi …sorry to hear of yout recent diagnosis…I think its natural to try and look stuff up and make sense of it all for you…alas MS seems to be different for everyone…I think you are wise to come off the web and stick to here…for info and advice…and your ms nurse should be there too for support…

Sounds like you have allot on and sorry to hear of your fathers illness…look atfer you for now…

E x