Hi Everyone,
i have just been told i have MS, feeling very mixed up,alwys tired. Not been told much from consultant or doctors. What will happen next??? Will i ever feel normal again???.
Cheers
Hello, and welcome to the site
Sorry about your diagnosis. It’s always a shocker
What happens next kind of depends on you and your MS, but two things generally happen. One is that you find a way to come to terms with the diagnosis. The other is that you find a way to best manage your MS. Unfortunately, neither of these things is quick.
Getting a diagnosis of a disease like MS is often likened to being bereaved; losing someone close. We have really: ourselves - who we thought we were; who we thought we would become. Getting our heads round this can take quite a while and involve lots of different emotions. The “stages of grief” model explains these quite well, although we don’t all go through each stage. Ultimately, we get to acceptance and can move on.
Best managing our MS depends on various factors and these will vary between people. For me, a really important one is understanding MS, its symptoms, treatments, meds, etc. Knowing what to say to people, knowing what to ask of GPs, MS nurses, neuros. Another important one is experience: knowing when to push through something and when to rest, knowing our bodies, knowing our MS, what works and what doesn’t. None of this happens overnight, and it does get easier with time. Btw, I’m not suggesting here that you go and read everything you can lay your hands on about MS. Take your time. Do it when you’re ready. Stick to the reputable websites too (e.g. here and the MS Trust) - there are some really crazy ideas out there! And when you do start reading, please bear in mind that MS is incredibly variable. You will NOT get every symptom you read about! And even if you do get a certain symptom, you may get it very mildly.
On a more practical front…
Your neuro should have given you the contact details for an MS nurse. If he/she didn’t, then give his/her secretary a call to get them (or ask your GP to do so). MS nurses are our first port of call when we need advice. GPs are generally pretty ignorant of MS (some have some very weird ideas about it!) and, even when they aren’t, they tend to not do anything without approval of the MS nurse or neuro.
You need to tell the DVLA about your diagnosis. The standard process is that they will put you on a car only three year renewable licence (at no cost). If you drive anything other than a car, you will have to resit the driving test. You have to tell the DVLA - if you are involved in an accident and they find out you have MS, you could be fined £1000.
I recommend you also tell your employer, but this is entirely a personal choice. People with MS are covered by the Equality Act. As part of this, your employer is legally obliged to make “reasonable adjustments” to allow you to stay in work.
If you have a critical health policy, please claim - MS is normally a payable illness. If you have a mortgage, please check the small print - there is sometimes a critical health cover aspect that you can claim against. There is often a time limit on how soon you have to make a claim, so do this sooner rather than later.
Give your MS nurse a ring and ask for some help with any symptoms that you are having trouble with, for example, there are meds for fatigue. There are also a lot of free booklets by the MSS and the MS Trust about different symptoms. Both organisations do a booklet on fatigue so you might get some good ideas by reading them.
Finally, if you haven’t already been told about vitamin D3, check out the vitamind3uk and vitamindcouncil websites - there is a growing amount of evidence that MSers should take vitamin D3 supplements.
Will you ever feel normal again? I suppose it depends on your MS - we all vary so much; some people have the kind of MS that they recover really well between relapses. If that’s the case with you, then yes, it’s a real possibility. Tbh, it’s more likely that you will adjust to a new normal. That’s something that MSers learn to do a lot. Whatever the case, for the vast majority of us, MS is NOT the end of the world. We work, we have relationships, we move, we have kids, we travel, we have friends, hobbies, etc. Sure, MS brings challenges with it that we’d rather not have, but there are far worse things to be diagnosed with. We can still have long, happy and fulfilled lives. So many can’t.
Hth & sorry if it’s all rather too much to take in at once!
Karen x
Hi and welcome to the site
I’m sorry to hear about your diagnosis. It’s hard for all of us when we hear those words. It doesn’t feel like it now, but there will come a time when you’ll adjust and be able to move forwards with your life. For now though take your time in getting to grips the news - there’s no rush.
Other than everyone on this site (who were and still are a tremendous help) one of the ways that I got a handle on things was to learn as much as possible about MS. Have a look at the ‘about ms’ section. You can download, read online or order in paper form various publications on all things related to ms - including work & financial issues and the various help & support available.The ms trust is also an excellent website and the same thing applies - you can order publications from there and it has a wealth of information to peruse. It’s worth sticking to the official websites though - the internet has a lot of rubbish on it as well as being a fantastic source of information!
If you haven’t already then find out whether there’s an ms nurse attached to your hospital. MS nurses can be a fantastic support and can open many doors to services that you might not otherwise be aware of. They can also be your first stop for any problems you may encounter or for help in managing your symptoms, medications etc. It varies of course but mine is worth her weight in gold and I see her regularly.
Medications are a massive help. There are loads available for the various symptoms of ms so there’s no need to suffer in silence. Meds can make a big difference to how we feel on a day to day basis for our most troublesome symptoms - inlcuding fatigue which a lot of us are on meds for.
DMD’s. Have they been mentioned to you? If not then it’s something to speak with your neuro about. The ms decisions website is excellent for information on the various ones available. There is a criteria to be met first as to whether they’re offered to you.
Coming to terms with having something like ms is difficult - of that there’s no doubt. But you will find a way and if you need help then there are various services available. Us lot for a start!! Telling people that you have ms is very much a personal choice but as Karen says telling your employer is definitely worth considering. Once they know they’re then in the right position to be able to make any adjustments that you may want or need.
Finally, remember that you’re the same person that you were prior to your diagnosis. Life continues and you can still lead a happy one. It may mean making a few changes here and there but over time you’ll learn what your limitations are, what’s best for you and amend things to suit you.
It’s a huge learning curve but you will get there. In the meantime look after you and remember that we’re all in the same boat here and understand what you’re going through and how you feel. We’re always here when you need us
take care
Debbie xx