i have just been diagnosed with MS on the 5/4/12. I have no idea what to expect. While im grateful for a diagnosis the words MS still scared the hell out of me when it was confirmed. I’m so confused in what it means and how my life will turn out. I’m also frustrated that i have to wait three months for treatment and am worried i will relapse more during the wait and cause more lasting damage to my brain. Any advice would be most appreciated. Everyone keeps telling me i will be fine but i just feel like screaming you don’t know, you don’t have it.
Hi Steph x I’m undiagnosed so I don’t know much about what happens at the stage you find yourself in x I just wanted to offer my support x
There are lots of people on here that have been there and I’m sure they will be on soon to give you some advice x
In the meantime I would try to stop worrying (I know! - easier said than done!) x but you have a diagnoses now and the medical team you are under will be doing their best for you. Read the other sections of this website as it contains lots of good advice for coping with various things - but I will say the one thing I have learned since being on here is that everyone is different xxxjenxxxx
Hi Steph
I know how you are feeling. Mine is a long story but I am now waiting for funding for treatment. Along the way there have been some miscommunication holding this up and it’s frustrating as you just want to start medication in the hope it will deter further attacks.
When anything new symptoms happen I just look it up and that generally calms me down to know that its normal albeit unpleasant. This forum looks like one I will be using a lot.
Good luck and try not to worry
sue
Hi Steph and welcome to the site
Receiving a diagnosis is always a double edged sword. It’s good news in as much as you now know what you’re dealing with but of course on the down side, nobody wants bad health and it can be hard to come to terms with.
Give yourself a bit of time to get used to the news and when you feel ready have a look at the publications available on this site and the MS Trust which you can download, read online or order by post. They’re very useful and cover a wide range of ms related subjects.
I wasn’t sure whether you were referring to dmd’s (disease modifying drugs) when you said you have to wait 3 months for treatment? DMD’s require funding from your local pct which is why sometimes it can take a while until you actually get them. But it shouldn’t be too long. For more information on dmd’s have a look at the ms decisions website.
The other thing to mention is medications - there are lots available for ongoing and persistent symptoms that you may have, so have a word with your neuro. Meds can make a huge difference to us with bothersome day to day symptoms.
Have you been assigned an ms nurse yet? If not then give your neuro’s secretary a call and find out whether there is one at your hospital. MS nurses are worth their weight in gold (mine is!) and can offer all kinds of help and services that you perhaps wouldn’t know about.
The main thing is to take your time in getting used to the news and remember that ms is very much a personal illness so what may affect one person may never affect you.
Take care of you and don;t forget we’re here if you have any questions or need to chat
Debbie xx