Hi, I was diagnosed last Friday, and the whole week has went by in a blur. I got told that I would see the MS consultant quickly but looks like it is going to be next month. I have not started any meds yet, dont even know if I will have to. I have taken some time off work, just to get my head round it. x
My doc advised me to join this site too - it does help to have others to talk too
Take one day at a time - a diagnosis is a lot to get your head round - but you will in time.
When you’re ready there’s lots of info on here and the ms trust that’s useful.
DMD’s are disease modifying drugs which are designed to help reduce the amount & severity of relapses (and possibly to help slow down progression). A criteria needs to be met first so not everyone is offered them, and not all the ones that are, decide to accept them. The ms decisions website gives lots of info on them.
Maybe jot down a few questions you have ready for when your nurse comes out. In the meantime look after you.
Hi Clare, Congratulations and commiserations! Congratulations because you know what’s wrong and commiserations because the dx is a lots to take in. Firstly let me tell ou it’s not the end of the world. Ms can’t kill you and we go on to live happy and fulfilled lives. There are a few legalities that you wil have to take care of. You will need to inform the Dvla of your condition. They have a medical form online which is quite straight forward. They write to your consultant who will ok you to drive and issue you with a 3 year licence. Don’t be alarmed this is just to make sure your ms doesn’t affect your safety to drive. Secondly, you need to check all your insurance policies. Mortgages often have to have critical illness cover and ms is one of the listed illnesses. They often have a time limit in the small print so if you have any policies check them ASAP. Finally to answer your question on medication, I take amatriptyline which works well for me, you’ll find what suits you as we are all different. Welcome to the club and please don’t panic, life carries on and for me, it’s better because I appreciate more what I have got Best of luck with your ms nurse, Chis
Hi Claire, I am sorry to hear of your diagnosis. I am also new to the site, I was diagnosed last Thursday and am trying to get my head around things too. I have been off work for 12 weeks and my neuro advised waiting to back til new term in September as he said it will give me time to come to terms with the shock. I am lucky too in that my head teacher has been very supportive. I am trying to think positively and take each day at a time and am currently waiting for an appt with my neuro colleague who specialises in MS to talk to me about meds. It is a great support to hear from other people, never thought in a million years I would be posting on a forum but is has proved invaluable for information. I will look forward to hearing how you get on with your MS nurse and what advice and support they give. Xx
I used to do aqua fit which really helped but I had to stop for some time 'cos I’ve not been well and now my swim partner can no longer do it So I’ve now got two exercise dvd’s (which I ordered through this site) that I’m going to try. Whatever you decide to do though do it at your own pace - no one elses. See how you go because everything about ms is trial and error. You’ll find out what your own limitations are over time. I used to walk for miles virtually everyday but as I’ve not been able to do that for a long time I opted for aqua fit instead. There’s always something else to try
Re your studying and hoping that it would take your mind off things - I find the best form of distraction is doing things that I enjoy and make me laugh. Sometimes it’s spending time with friends and family, others it might be flopping out and watching a dvd - depends how the mood takes me.
Take your time adjusting Clare - once you’ve seen your nurse for the first time and got that out of the way it’ll be another thing ticked off your list. Another step forward…
Quickie about exercise: basically do whatever you want! But, as Debbie says, do it at your own pace and no one else’s. It can be terribly frustrating to be doing less than you used to, but there is absolutely no point in trying to keep up with that or anyone else.
I used to do ballet and taekwondo - both post my diagnosis. When they became too much, I bought an exercise bike. I now go to the gym with some other MSers and use the bike, the rowing machine and some of the weight machines. I don’t go swimming because it makes me feel worse, but I know other MSers who swear by swimming. That’s something that you’ll find with MS - we really are all different!
So… walking, gym, swimming, dance, wii, exercise dvds, martial arts, aquafit… any and all of these or anything else is fine. Just make sure and not exhaust yourself, keep well hydrated and don’t get overheated. Don’t worry if your symptoms worsen when you exercise: it’s normal and will go once you cool down properly.