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I am new to all this

Hi everyone, not sure what to do here, I have just been told that I have MS.  I have had an MRI of my brain which apparantly confirmed I have MS, I now have to have an MRI of my spinal cord and a lumbar puncture.  I am being referred to see a specialist MS nurse and will have 101 questions.  I realy don't know what I should be doing.  I have felt all sorts of emotions since Monday.  Any help will be greatfully appreciated....... 

Hey Vicki

                My heart goes out to you m8 must be alot to take in, youv'e found the right place tho :) there are many peeps on here that will be able to answer pretty much any of your questions and hopefully ease any worris you may have, im sure Karen will pick up you thread pretty quick and point you in the nright direction :) chin up m8, if your in need of a chat or a yell for that matter your in the right place :)

Hi Vicki, and welcome to the site happy2

Sorry to hear you've joined our elite club - never an easy thing to find out, no matter how the neuro tells us letdown

 

What do you do? Well, I suppose the best advice is to take it one step at a time. Do things as and when you're ready.

 

Most people know very little about MS and what they do know is often tainted by some very bad portrayals from TV. Only a small proportion of MSers get MS very badly and there are a load of meds, therapy, etc, to help us manage things so, for most of us, it's actually nowhere near as bad as most people think! If you want to find out about MS, have a look at this website and the MS Trust website. They both have lots of info and you can download information booklets for free (or order hard copies for free, if you prefer). Very importantly, try to remember that MS is massively variable and these booklets and websites cover every possibility - you will not get every symptom they talk about! (And even the ones you do get may be very mild.)

 

There is only one thing you have to do and that's tell the DVLA that you've been diagnosed. They will change your driving licence to a 3 year renewable one. This will have no impact on your insurance - insurance companies are not allowed to increase your premium. You'd be sensible to tell them though, so they can't argue that you didn't disclose information.

 

Have a look at your mortgage documents or anything else that might have a critical health cover policy in it - MS is a payable condition. Some policies have time limits on claiming, so don't wait too long to have a look.

 

Telling people is a bit of a biggie. To tell or not to tell? A purely personal decision. I didn't keep it a secret - made life easier in my eyes, but others choose to keep it private. People can be a bit weird when told. Some haven't a clue what to say so they end up avoiding you. Some become rather gruesomely nosy (weirdos!). Some are concerned, but fine. Some think you're going to die (you're not!). Some are genuinely interested, but supportive with it. Etc.... So be prepared for anything! I do recommend that you tell your employer. MS is covered by the Equality Act which means that employers have to make "reasonable adjustments" to allow you to stay in work. This means anything from buying you a different chair to changing your working hours and more, so it's only fair that they get a heads up that you might need extra support from them.

 

Other things... I recommend taking a vitamin D3 supplement if you aren't already (there is growing evidence that it's important for MSers; the most commonly recommended amount is 5,000iu which your GP will probably faint at the sound of - it's very much more than the recommended amount and most GPs haven't a clue about MS), eat healthily, keep fit and flexible, don't smoke if you can.

 

Take it one day at a time. You'll be OK. The first couple of years can be rough emotionally, but we do tend to get to a place where life is actually OK. In fact, there is no reason that life can't be good. It'll be different, but it can still be good.

 

Hang in there.

Karen x

Thanks for replying - I didn't think anybody else would still be up last night.  My husband had gone to bed because he had to get up for work today but I am not working today.  I had had a few whiskies and looked at this website that I found before my brain scan, but hoped that I would not need after it.  I deliberately buried my head and am only now reading more about MS.  This is the first time I have ever gone into a forum, I don't even do facebook.  I have just written another post as I didn't see this one again until now.  Anyway, thanks again, I really need to get my head around this and find out more about MS.  Thanks for the advice about the DVLA, although I am unsure about telling people at work yet, because it is still a lot for me to understand at the moment.  I am trying to think positive which is v difficult as I am feeling all sorts and positivity is not at the top of the list, but I have probably had this for years, even though it was not something I thought about  - you don't do you?  I am sure I will be coming back to talk - once again thanks for replying.

Vicki     

Hi Vicki

Just wanted to Try to cheer you up. Karen has given you sound advice. Don’t worry too much about the future but takes things on a day-to-day basis. It’s easier to cope with. It is a shock to be told that you have it, but you may have had it for a long time. You just didn’t know.

I only found out for sure in mid-Dec but suspected that I had it several months before that. It has made me feel very sad - for the person I used to be, but that’s normal. In the end you just get on with your life because that is what you do.

Keep smiling and you’ll get there in the end. As Karen says there are still loads of good things to experience yet.

Teresa xx

helloVicki and welcome to the site

Being told you have ms is very much like a rollercoaster ride when it comes to emotions - it's an awful lot to get our heads around and it throws up all sorts of questions and worries. 

For now though concentrate on you. When you're ready there's lots of information available on ms - including publications on work & financially related matters too. These are definitely worth looking at and both this site and the ms trust has a good selection to choose from. Stick to the 'official' ms sites though because there are all sorts of wild claims of cures and the like out there. Avoid those like the plague! 

Telling people (friends/family etc) that you have ms is very much personal choice but there are advantages in doing so. I would strongly recommend telling your employer at some stage. They are legally obligated to make 'reasonable adjustments' in your workplace and to your hours etc should it be necessary. I was upfront about it from the start with my employers and also close friends and family. To me they're all part of my support network.

Above all give yourself a bit of time - it's a big deal but you will adjust to the news. You may need to tweak a few things here and there but life will carry on and you can still enjoy it. You'll learn what your limitations are and if you're anything like me then your priorities may change too. Other than the fact that I have ms - I'm happier now than I've ever been. A lot of the silly pesky little things that I used to worry about I just shrug off now. Ultimately you're still the same person that you were on Monday before being told, it's your situation that's changed.  

take care & remember that we're here if you need us happy2

Debbie xx