Last reply 1 month ago
New to the group.

Hi all I’m new to the group having only been told I have MS last Thursday although haven’t been officially diagnosed but the MS consultant is pretty sure. Bit of a whirlwind following the news bit being as positive as I can. I have an appointment with my specialist nurse in a couple weeks where treatment will be discussed. Have been given the MS trust website to look at the treatment options bit wondered if you guys had any advice on places to look re treatment, maybe somewhere I could see what people who are having treatment think of them.
Anyway sure I’ll have more questions in time so will spend some time looking through here and hopefully pick up some tips and advice along the way.

Add categories

Browse categories and add by clicking on them

You can remove current categories below by clicking the ‘x’.


itsmewithms
1 month ago

Welcome the group that none of us, honestly, wanted to join ;-/ but we are all here together and it is a great site for information and support. The diagnosis of MS is a hard one to get your head around and it often takes some time to do it. Much of the information on the internet is outdated and awfully inaccurate. Try to stick with the MS Societies or places like Dr G or one of my favorites in the US Dr Boster. He has a lot of videos you can learn from including coverage of about all the available DMTs. This is his message to the newly diagnosed- https://www.youtube.com/watch?v=wvQXygHtYzc&t=18s

You can search for previous discussions in this group by clicking on the tags below your post or using the search glass in the upper left. You can also look for members and by area there as well. You can friend people using the little head icon in the upper right and so much more.

I was diagnosed in 2005 and was started on Copaxone (10 years) but had mounting lesions and issues. It was about all there was back then. I was switched to Rebif and didn’t have any more lesions but more disability so I was moved to Ocrevus. Stable since then. This kind of follows an “escalation” pattern of treatment (which I’m not in favor of) but in reality the treatments have just gotten more effective with time and I am just catching up. As I said, you can search for the various treatments on Dr Boster’s site and others. I’m sure this group will offer advice and welcome you warmly-


watsoncraig
1 month ago

Hi @andyg welcome to the group. This is a great place full of answers and motivation.


andyg
1 month ago

Thanks @itsmewithms and @watsoncraig sure I’ll find a lot of useful info here.


stumbler
1 month ago

Hi @andyg, here’s as good a place as any to start your research:-

https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid


vixen
1 month ago

Hello @andyg and welcome. Some hospitals also have great information about their neurology departments. Top tip is to never randomly surf for info, always use official sites or you might get overwhelmed. Searching for posts on here is a great facility, based on people’s real experiences. And ask any questions you might have, you’ll always get a response. I was diagnosed over three years ago now, so too was my sister. We are both doing OK, although obviously it’s a huge shock. Hope you are OK, all the best 🙂


underdog
1 month ago

Hi @andyg

Welcome this exclusive club!
As posted above there is some great advice on here by MSerS for people with MS. I found my first 12 months of diagnosis and support really difficult as I found communication with my Neurologist and MS nurse difficult and frustrating at times. For many people finding themselves having to come to terms with a medical diagnosis requires some level of patience as things don’t seem to move to quick under the NHS.
My advice to anyone new to the world of MS is to find yourself a MS support “bubble” and try to find a local meetup group, where you can meet and talk to others going through the same things. MS affects all of its club members differently and no two MSers are the same. The stigma of MS can be a negative one for many, but MS is (and has been) a liveable condition nowadays so with a positive attitude and good support there is no reason you can’t fulfil your dreams and aspirations.

Treatment wise, there is a wide selection of DMD’s available now. I have stabilised well for the last 5 years on Tecfidera (the pill which you take twice a day) and it’s luckily pretty easy going for me and fits into my lifestyle well.

Good luck and take it easy


cwright17
1 month ago

Welcome! I would agree with the other posters, look at official sites for information on medication. I use the BNF and medicines.org.uk as like a pre-check on the information slip you get with medicines. On here is always good for asking questions and other people’s take on different aspects of ms, including experiences with treatment. I’ve found that having friends and family, who understand what you’re going through, helps a great deal. My partner will make me laugh, when I have a bad day, telling me he will take the ms right out of my head and beat it up for making me feel bad, and my mum will force me to do stuff when my fatigue is building up, just to get me on my feet and moving again (such as going to the shop for some sweets), or sit there and listen when it’s all overwhelming. It’s also good to celebrate a win with someone, for example if you have relapse-remitting, having someone be happy with you that you’ve gone back into remission. It is scary at first, but having that support group makes all the difference.

Also, don’t watch other people in further states of MS, that will worry and terrify you.


andyg
1 month ago

Thanks for the replies folks. Certainly lots to look at and take in. Sure I’ll have more questions further down the line too.

Join Shift.ms to reply to this post.

Become part of the community so you can chat, compare and learn from other MSers.