Hello newly diagnosed after experiencing symptoms out of the blue. Trying to stay positive but worried about the future. I’m 57.
1 Like
Hi Mel’ the worse part is nearly over now. Depending how far along your journey you are. You’ve had your initial symptoms, loads of test and a diagnosis. I guess your next bit is to meet your MS nurse and discuss disease modifying therapies 
and of course, you’ve found this place - that’s a bonus. There’s a load of knowledge and experience on here - the members are great 
It’s not a brilliant diagnosis for anyone but, your life has changed now and MS is here for the long haul. It doesn’t have to stop you from being positive and having fun. Try to relax into it, learn all you can about it and take good care of yourself.
Chat on here whenever you want to
Best wishes mate x
Jon.
Hi
I was diagnosed in September 2024 with RRMS and like you it came completely out of the blue. Im 55 now but was 53 when diagnosed.
Morag x
1 Like
Hello @melandscully I remember when I was diagnosed a little over 19 years ago when I was just under 53 years old. A scary worrying time indeed!
I hope my story of life with MS gives you some optimism. When I was diagnosed there were just 3 or 4 MS disease modifying treatments available. The newer treatments are far more effective than any of those 3-4. I do have symptoms and they can be a nuisance but I do walk unaided around the house , use a walking stick/pole out in the garden and a small folding mobility scooter when out and about. Bladder urgency can be a worry but I’ve only wet myself twice in years. Like many of us I feel really drained in hot weather. I’ve lost some balance but haven’t fallen and probably through a combination of MS and being 72 years old I’ve lost a noticeable amount of muscle strength (but it kind of gives me boysh pleasure that my 5 years younger wife still asks me to open tight jar tops etc)
Life is OK , could be better, everything takes longer and more effort but I’m enjoying it.
As @jthatcher says the next stage is going to be selecting an MS Disease Modifying Treatment / Drug of which there are around 20. The general medical consensus is to go for the most effective ones. They can sometimes have what looks like a scary list of possible side effects but you will be checked carefully for any signs of these.
All the best and Feel free to ask me any questions
1 Like
Many thanks for your reply. When I left hospital in May I was told by the consultant that he’d see me in 8 wks but appointment has come through December 2nd! Rang today to say have no information re what type I have, what treatment might be available and when I’ll see an MS specialist. I have no clue what to do.
1 Like
Thanks for your message. I feel abandoned by the NHS. 8 week follow up has come through for December (I’ve spoken to secretary she’s going to look into it.) Meanwhile I have no confirmation of what type I have, what treatment might be available and having to deal with tingly fingers and toes, unpredictable walking and am signed off work. I’ve been very down.
Hi I saw your message. Can I ask what your coping strategies are? I’m struggling emotionally.
Thank you
Hi @melandscully although it was a long time ago (19-20 years) I remember that horrible period of ‘being in limbo’. If it helps then it’s not just you - the UK just doesn’t have enough neurologists. I suppose that one thing to try and keep in mind is that MS isnt like some infectious disease or even cancers that need treatment as soon as possible/urgently.
When I was diagnosed I spent a lot of time looking up MS and, ignoring any references to obvious fake ‘miracle cures’ I came across Overcoming MS - how to live well with MS. Website and books produced by an Australian Professor of medicine who has MS himself. Lots of useful information and recommendations on brain healthy / supportive foods and diet, exercise and mindfulness/meditation. It’s worth looking at the website including the mindfulness and meditation guides/ sessions which apart from anything else can help with the anxiety and stress of diagnosis.
Overall, OMS is useful in showing people that although there are very useful and important drugs/ treatments to take there are also things that we can do to support our body (and mind) in dealing with MS
1 Like
Hi Mel’ here’s not much that you can do at the moment unfortunately. It sounds like a lot of it has already been done. All of the waiting is horrible isn’t it. They took a while to finish with me from my first symptoms to diagnosis - 3 years. I’m now on yearly check ups with my neurology consultant.
I have a lovely MS nurse and, I’m currently waiting for appointments with the GP for lots of vaccines. I estimate another 2 or 3 months now before someone comes round to put the disease modifying therapy in my fridge. I’ll have to make sure I’ve got some decent tea bags and fresh milk in for that one. Maybe some posh biscuits as well
As Hank says - there’s just not enough of them to make things go quicker. Stuff will still be happening behind the scenes. They may well be having multi disciplinary team meetings to try to figure out what type of MS yours is and what is the best way forward for you.
In my experience, things often go slow then, it’ll speed up a bit with appointments and tests then, slow down again for a while.
I like the advice above from @Hank_Dogs
Do have a read on MS and learn what you can for now.
Keep your diet healthy as best you can. It will help.
I’ve been taking Omega 3 capsules for a couple of years. I don’t know if they’re helping but, they’re certainly not doing me any harm. My frozen shoulders have been feeling better for the last month or so.
If anything feels new, make a note of it and the date and duration. It may help later.
Try to keep yourself as normal as you were before all of this and, try to maintain a sense of humour. It’s not always easy but, a laugh really can brighten your day. My sense of humour can be a bit monty python and isn’t always appreciated. I told my nieces that I caught MS and epilepsy from a pygmy goat that farted on me at the local petting zoo 
Wherever you are - have a look for a local MS group. I’ve heard that the one here in Swindon is good. I really must get there for one of their coffee mornings.
Keep chatting on here as much as you’d like.
Take care mate x
Jon.
1 Like
Hi
To be honest, I don’t have any strategies as such, I just take each day as it comes. I obviously have a kind of routine, apart from that I generally just muddle along. Sorry I can’t be of more use, always willing to “chat” though! I was at hospital yesterday for my infusion so apologies for not responding sooner.
take care
Morag
2 Likes
One other thing just came to me, when I was initially diagnosed I was in a rehab ward and when I was getting physio to get me trying to walk again I wasn’t in a good place mentally and kept bursting into uncontrollable fits of crying. One of the physios asked me if I had had a ‘good cry’ I replied that I had not and he sat with me for a while and I did just that. It didn’t solve everything but it really did help. After that we talked and I sure felt a lot more positive afterwards.
2 Likes
Anybody else lost confidence with driving?
1 Like