I am still coming to terms with being diagnosed with MS. I was crestfallen and dumb struck…sitting there with my wife who is a super star and my rock. I didnt want to accept the findings and looked for another escape…but there wasnt one!. Really don’t know what else to write as I am so new to this and still looking for answers and support if needed. Many thanks for taking time out read my post hope we can all go on with hope and strength. Jason
Hi Jason. I totally understand how you feel. We all do. In a week-I’m 3 years diagnosed. I never thought I’d accept it. But I have. I am still me. And I am ok. It’s a big adjustment but you will be ok. Just take each day as it comes. Take care x
diagnosis has its benefits. Now you can label what you are dealing with. With specific conditions there will be protocols that are very likely to help. As no two cases are identical, you are the expert for your own situation. You will never stop learning. I have been living with this for nearly 30 years and I still get surprises and I still make big mistakes, but I am better at listening to my body and also working out if any new problem is MS related or not. Try to establish good communication with family and friends so that they can tell when things are ok / rough / super rough . In my experience your thresholds and boundaries will vary significantly over time. By this I mean something that you currently would think of as a massive no no right now, might be almost insignificant in the future. Try to gather a support crew of family / friends and health care professionals who can help and support you if needed. There is a very wide range of knowledge experience, wisdom and support to be found via places like these forums although there are not many absolute certainties.I wish you all the best.
Well put Mick and really hits the spot!
Jason, believe in yourself and embrace support from your family and friends.You just need to listen to what your body is saying and adapt. 15 years ago I was steering out a hospital window in a wheelchair thinking this is it. 15 years on it isn’t… I work full time. I travel the country for the company I work for. I go to meetings and walk in with my stick at 43. Its my safety blank. People don’t bat an eye. I used to think everyone was watching me.
Take care, Keep safe and look after yourself.
Hi Jason, you can do this! As other posters have said, it might not be easy but just listen to what your body is telling you- this is key.
And know that you can do this, it’s not the end, even though it might feel like it right now, it’s not,
Hi Jason, I`m a grandma round these parts MS wise! Had the little so and so for 22 years, but only got diagnosed this month.
I`ve ben all round the houses, seen 17 neurologists…only the last one was a brilliant man. I had to go way out of my area to get the diagnosis.
Apparently I am a rarity with Spinal PPMS.
But I and ever so many others, am living proof that life goes on and can still be good with MS.
Take your time to get your head round it lad. You`ll be fine, as long as you have good support, the right medication, and accept your limitations.
Jason it will feel very overwhelming for a while. Some people go through the grieving process when diagnosed as your future is possibly going to change from how you expected. Try not to bottle it up, speak to someone. This could be a friend, family member, nurse, GP, your neurologist or even the forum. As the others have said, you probably can’t imagine it now but you will cope with things as they happen.
We all have different symptoms and there’s no reason for you to believe you’ll have all of them. The people on the forums live with ms and have very different ways of coping with symptoms that you won’t find in any booklet, most will be happy to share this information.
There’s no shame if you need antidepressants to get over this period, or longer. I’ve been on them for 13 years and will stay on them as I cope well with them. Quite a few of us use them. They work!
Admitting that you’re struggling is the hardest part and you’ve done it. Take care
Hi Jason, 22 I went blind (came back)happened again (came back) I’m not going to go into my history, my point being is life really throws a lot of (beep)at you, 20 years on and I still havent accepted it - I’ve made sure to embrace every opportunity and been lucky enough to experience this world by travelling- Northern Lights as one- as soon as I was diagnosed I booked a flight and the journey started. I no longer fly, havent in 10 years, but its personal choice. You will read comments that make you question things, just research them - dont take them straight to the heart. If anything to help you- pillates/yoga- core strength- I still do these even in a wheelchair, get your vitamin D levels, iron and B12 checked and research them. Try to look at things objectively- mine started at 18 years old and I’m now 41, Things are still being thrown at me and I’m always trying to look into challenging it. If you disagree with a neurologist- see someone else this is yours and your wife’s life. I wish you both all the bestX
Hello Jason. There is already a lot of good advice here from people who are quite a way down the MS line. They have been helpful and kind to me. There are snippets of real inspiration and wicked humour all over the place.
My advice is to be honest with yourself and don’t beat yourself up. 35 years on from my first symptoms, I’m still here planning the future.