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help and advice needed pls x

Hi ive just been diagnosed with ms cant get my head round it the hospital was usless on information they sort of said you have ms bye! Im worried and scared about many things including weight as im a big girl . exercise what i can and cannot do gggrrrr just dont know what to do or how to feel xxx

Hi it’s hard to get your head round it to begin with I was diagnosed with CIS last October and started on avonex as there’s a high chance I will have further attacks!..it is very hard to begin with but with time you accept it but you have to go through a whole host of emotions before you get to acceptance believe me I really struggled and I know what you mean about hospital but best thing you can do is get lots of info (positive stuff) and take one day at a time and I said its either sink or swim and I ain’t sinking!!! I’m well just now so its easier to feel like that but another relapse would be a different story! I used to be terrified every day I would have another BUT nobody know wot the future holds and I am the worlds worst worrier but this whole thing had changed me cause you have no choice it could be worse! And I have to keep telling myself don’t waste the good times worrying about what may never happen cause you would be really p****d off if you did and nothing happened! Actually can’t believe I’m being so positive as I was always a negative thinker but hey if I can do it anybody can believe me!!..I hope you feel better soon but it takes time and a lot of mental hard work to begin to get out the other side and you will…don’t let it win it can take many things but it can’t get them without a fight!..good luck you will be fine once you get your head round it if you want a chat just pm me…take care Emma x

Hey Hun - yes it is scary and you will,probably feel all at sea. What I have learnt is that quite often I have had to fight to get things done: Suggestions: Write down a list of questions Phone local hospital and ask to be put through to MS nurse Ask them your questions and ask if you can have an appointment with them if you would like this. Look at NICE guidance for MS as NICE is the medical law. Ask MS nurse whether they run getting to grips or introduction to MS course for newly diagnosed Find out if there is a local MS support group. Google your local hospital and search to see what is available to MS patients. There may be a physio to give you advise on exercise and a dietitian for diet. Finally this site is fabulous I have learnt so much and got a great deal of support from my fellow MSers Hugs Minx

Hi Lestalady,

On the bright side, one of the reasons you haven’t been given a big list of things you can and cannot do is literally nothing is banned, with MS. Everyone is different, so your body will tell you what is OK for you, and what it doesn’t like. You will get used to listening to what it’s telling you - if you’ve pushed yourself too hard, or if you’re getting too hot (or too cold!)

You may never find out what triggers relapses - science still doesn’t have a complete answer to this one - but you may certainly notice what triggers day-to-day fluctuations in symptoms: what makes you less comfortable, or sometimes what helps. These won’t be the same for everyone, and that’s why there’s not a list.

Exercise is almost certainly beneficial for anyone with MS, as long as you know your limitations. Obviously don’t exercise to the point of collapse, or until you injure something. But commonsense should be fine. If you can tell you’re overdoing it, then stop for a while.

Tina

Hello and welcome :slight_smile:

Posts like yours make me SO angry! How the hell can so-called medical professionals DO this kind of thing and sleep at night?! GRRR!!! It shouldn’t happen, and I am really sorry to hear that it happened to you.

Thanks heavens for the internet at least - it is a great way of finding out info and getting support from other people in the same boat.

Min’s given you a great list of suggestions. I’ll add a few more…

  • Check out the MS Trust and the MS Society’s list of publications. They publish loads of free guides to MS and MS symptoms. You can order hard copies or you can download them. Please note though that MS is massively variable and these booklets have to cover every eventuality from the mildest of things through to the most severe. You will NOT get everything!

  • You have to tell the DVLA about your diagnosis. It’s pretty standard for them to put us on a three year renewable (free) licence. You also need to tell your insurance company what the DVLA do - they cannot change your premium (it’s the law), but they can refuse to pay out if you have an accident and you haven’t told them.

  • Have a look through all your paperwork to see if you have anything with a critical health clause (some mortgages have this, e.g.). MS is a payable condition.

  • Take it all one day at a time. Getting your head around a diagnosis like MS takes a while and it can feel like an emotional rollercoaster at times. So be kind to yourself. It does get easier.

Karen x