Very new to this. I went in for an MRI on my lower spine thinking I have disc compression but the neurologist had concerns so extended it to full spine and brain. Turns out I have a preliminary MS diagnosis. Completely threw me because I have had no previous symptoms yet I have multiple lesions in the brain and c-spine.
I’m going back for 2nd MRI with contrast and I have an appointment with the consultant in 3 weeks but does anyone have any advice on what to do whilst I’m in this limbo?
I have a 6 year son and I’m terrified I’m going to be unable to care for him. I was just not expecting this at all. For now my symptoms are just numbness and tingling in the feet and legs along with slight balance issues that all came on after I got flu or covid at Christmas but because there are ‘multiple’ lesions and I haven’t ‘improved’ at all I’m thinking it might be a quick decline
No advice on navigating your way through limbo land I’m afraid - there aren’t any magic tricks for that one. Just be kind to yourself - eat well, get good rest if you can, don’t catch yourself googling at 0400. All the things you would advise your friend to do.
Hi I’m sorry to hear your news it’s a stressful and unknown time for you and your family. Try not to fret too much, multiple lesions doesn’t necessarily mean a quick decline. MS doesn’t quite work like that it’s a funny disease you can have one that severely affects you or 10 that give only slight disability. I have a young family including two under 5 it’s a worry yes but you work out how to adapt and survive. There is lots of information on managing fatigue and conserving energy you have to be kind to yourself and don’t expect the worst.
I feel for you. I read your post eagerly as it is so similar to my story. One piece of advice I will give to anyone doing anything with the NHS - get your reports and read them yourself. Not only have I found solace in spending the waiting game reading up on potential issues and getting to understand what MS is and isn’t but they, more importantly, miss things to the point where it could be dangerous, in my opinion. Only from my experience, you have to understand, but I have found these ‘experts’ miss crucial points where they were abotu to pass them by until I pointed them out. They’re so busy and rushed, it’s nice to give them a little helping hand.
Back to your son and your potential future; life has a wonderful way of adapting itself. You will find strength in things you may have overlooked in the past in the rush of modern life. My dog saves my sanity on a daily basis, for example.
There’s not much more I can say without starting to come across as either whiney or patronising! Do try to get hold of the actual MRI reports though. It eats the time with research and helped me come to terms with what’s going on. It also helps when you can explain it easier to loved ones.
By the way, please be particularly kind to yourself if you find yourself doing all the wrong things big time. Just try not to do what I did when I was in Limboland, which was take up smoking again. That was a seriously bad idea and it took me several years to quit for good. As long as your coping mechanisms are at least (preferably much) less maladaptive than mine. you’ll be doing alright.
Hi there and I recognise the feeling of total anxiety about the future. When I was diagnosed around 19 years ago with ‘quite a few’ lesions in my brain I was quite sure that I would soon be in a wheelchair and told my then girlfriend that it would be totally understandable if she wanted to end our relationship and I wouldn’t feel any resentment at all. Pleased to say that I’m still walking (but use a mobility scooter for anything over 10-15 minutes) and in a couple of weeks that girl friend and I celebrate our 11th wedding anniversary.
What to do during the time before your appointment? I would learn everything you can about MS (but don’t scare yourself). My guess is that when you see the consultant you will be offered a range of Disease Modifying Treatments to think about and choose from , so it’s probably a good idea to start reading about all the Disease Modifying Treatments and their pros and cons. There are now quite a few treatments, some more effective than others , some by tablets, some by self injections some by infusion at a hospital. ( im not at all up to date with these - I think there was a choice of 1 or 2 when I was diagnosed!)
Also read about diet, exercise and general health for those with MS.
Start thinking about all the questions you would like to ask the consultant and write them down in a list to take with you ( it’s very easy to go into these sessions and find that you can’t remember all those questions that were bubbling around you mind!) Also think if there is anyone you would like to take with you ( it’s also very easy to leave those initial consultations and find you can’t remember a thing!).
P.S. I had Covid about 2 years ago and which made my symptoms much worse. It took about a year but they did die down - back to where they were pre-Covid , so don’t despair about a quick decline!
I think you read my mind! I have been doing all the above for a week.
I already weight train 4 times a week so I’ve adapted that based on where my lesions are in the c-spine area. Moving back towards an anti inflammatory diet and started using the Headspace app. Its all helped but I think that the research is also so confusing, if I word it one way my prognosis is fairly positive due to all the variables but if I change one word suddenly its much more negative!
Really appreciate the insight, thank you
Ahh!! I started again when he told me I needed a brain scan!
To be honest I’ve been on and off for years and whilst I knew it wasn’t good for me I didn’t know about the correlation between it and MS!. I stopped again 4 days ago. I’m still weight training so using that as a coping mechanism for now!
Did the smoking have an impact on your progression?
Thank you! I am fortune in that all this has been private so far as I’m covered through work. However after the appointment on the 16th I will have to transfer back into the NHS.
I have my MRI report so I have done a lot of research in the past week! I find its helping and hindering depending on the day! I just find it so odd that I have so many lesions according to the scan and have never had a symptom before Jan this year.
I dont know if its a good sign or a bad one but my list of questions keeps increasing.
May I ask when you were diagnosed and how things are now?
I totally recognise and understand the feelings of needing to work out a personal prognosis but one thing that you will get used to is living with uncertainty and not knowing what’s going to happen! As you’ve probably read, MS does affect everyone differently and so far as I can see, there is no rhyme nor reason behind all the differences. Certainly a poor diet, lack of exercise and a general poor health ( and smoking!) will make a negative difference but a lot probably comes down to individual genes/ genetics and ‘luck of the draw’ ! One lesion in one particular part of the brain could have far more impact/ produce more noticeable symptoms than a lesion in another part of the brain - or spinal cord.
MS does require a sort of ‘Zen like’ outlook on life. Something I found useful when newly diagnosed was the website and book ‘Overcoming MS ………… living well with MS’. Written / put together by an Australian Professor of Medicine who has MS himself. Living well through diet, exercise, meditation/mindfulness. The website has various useful resources ,
Yep. Even though you know it’s a rubbish idea, there’s also a little voice that says that you deserve a little something in compensation and anyway WTH?
At least you know you’re not alone. Whenever you have the headspace to give it up, please do. I know (only too well) there’s never a good time and that this is a particular bad one, but if the chance comes, take it. You’re quite right, it’s not terrifically good for anyone but it’s hilariously not good if/when you have MS.
@englishrm, I hear you. My story is lengthy but i’ll try to put it across in as short and lucid a way as possible.
It all started with a head on collision road traffic accident. Until then I also thought that I had been fairly fit and healthy in life with plenty of exercise and not too bad a diet. I then started with many symptoms.
Cutting it short -
Dec 2023 - accident
April 2024 - many symptoms - cardiology ruled out and MRI ordered
Aug 2024 - 16 lesions in Brain - Cervical MRI ordered and lumbar puncture
Sept 2024 - more lesions and positive LP - further spinal MRI ordered
Dec 2024 - possible SPMS diagnosis but held off due to possible Ankylosing Spondylitis
Jan 2025 - Rheumatology ordered more MRI’s but using the STIR sequence and bloods checked for a certain gene
Sorry for that but I find it easier to explain in that way I’ve gone from being totally fine to walking with a stick, forgetting most things, befriending SIRI, oh and having the weirdest of numb and ice cold sensations in just over a year. Still, I have a blue badge and a sunflower badge so I can’t complain
What symptoms do you have, if you don’t mind sharing? It’s a wild ride my friend, that’s for sure
Wow! Fast!
I started in Jan after I had flu and so far its numbness and tingling in my legs and sensory changes in my skin from the waist down. My balance is a bit off as well but thats it other than the tiredness! That one is really getting me.
Like everyone is saying, so different for each person. I’m just hoping that from nothing to this in 4 months but caught now is a good thing and not an indication of a quick decline.
Either way I guess we deal with everything as it comes.
It’s crazy how it affects people differently. My brother’s nephew was diagnosed about eight years ago and still runs marathons, I’m lucky if I manage to run a bath without either falling over or falling asleep
The one thing my neurologist and I figured out was that this all probably started back in 2007ish, for me, and that was the beginning, although the GP told me it was stress. Then again in about 2012, stress again but then the crash sent me over the edge somehow. I have read a few papers discussing how trauma can kick start AS and MS, so who knows
By the way, exercise really helps with the fatigue thing which seems contradictory but does help. Plus ensuring your D3 levels are in good order
Hello, I just wanted to reach out as your story resonates - and to add some hope. My diagnosis (over 9 years ago now) was a sucker punch out the blue. Numb toes and groin have concerns about spinal compression. An MRI showed demylination on my spine and brain and I was told I very probably had MS. A follow up scan 3 months later confirmed the diagnosis. I was fit and well and had thought the numb toes and groin had been caused by a spin class or power lifting. I catastrophised and feared the worst.
Roll forward 9 years and I’m still fit and well. If anything I’m fitter and stronger than before diagnosis and have an enhanced appreciation for what my body can do and have learnt to prioritise my well being. If you’d offered me this when I was first diagnosed I’d have bitten your arm off. I’m now hoping I’ll be able to say the same in the next year, 5 years, 10 years…
All of our stories and journeys are different - but I’ve come to realise whilst I have been very lucky with mine so far I am by no means unique. There are so many people with MS out there living and loving their full lives.
So my advice is be kind to yourself in this first period of uncertainty and potential diagnosis. It’s hard not to fear the worst and focus on what struggles may come. I just wanted to add in something to counterbalance that. Real stories that have me hope got me through my diagnosis.
That does definitely give me a different perspective.
My big concern is that I’m 46 in a couple of days and progression tends to be faster from what I have read so far when you are considered late onset?
Can I ask how old you were when you were diagnosed?
I do think a lot of this may come down to attitude. I suspect if you allow yourself the time to adjust but then make that decision to do whatever is needed to fight then maybe you’ll be ok.
That’s what I’m trying to do even though nothing has been confirmed yet
Sorry to jump in on your conversation with @Katy79 . It’s just to say that I was near my 52nd birthday when diagnosed around 19 years ago. As mentioned earlier, although I now can’t walk continuously for more than 10 mins or so, and have some bladder ‘urgency’ I’m otherwise generally OK.
MS is scary and i remember my real fears after diagnosis that I would be fully and rapidly disabled . OK, at the moment and until some good remyelination therapy comes along, MS is a one way street but with a good DMT and taking good and gentle care of yourself, life does go on.
I’ve gone from being totally fine to walking with a stick, forgetting most things, befriending SIRI, oh and having the weirdest of numb and ice cold sensations in just over a year. Still, I have a blue badge and a sunflower badge so I can’t complain 
