Very new to this. Received unexpected diagnosis on Friday , following an MRI scan for a suspected stroke, they found MS lesions. Have received 3 days of steroid via cannula and I had a lumbar punch on Monday.
Getting the feeling and movement back on my right side. But getting quite intense headache and almost constant fatigue. Have appointment with neurologist next Friday. My work have been brilliant and have some time off to recover and get my head around it all.
Honestly though I’m feeling very overwhelmed, a little lost and could really do with any advice or information from people that have been through the early stages after a diagnosis. What should I expect? What’s to come?
Hello Kate,
Welcome. Sorry the MS dx can be quite overwhelming.
Yes I find the Prednisolone steroid always fast acting whenever I have a bad relapse and in need of it.
It’s good you have a considerate employer for support; I’m lucky mine is also understanding.
You’re on the right track now for the treatment so you’ll soon feel better again; I find positive thinking always helps too.
Best regards,
JP
Hello, it must be really scary for you and i am sure your mind is running. I had my first brush with MS in my early 20’s. Like you one side of my body stopped working. Again like you lots of scans and 3 days of steroids. Then things started to calm down and i felt like my i did before. Then every thing was like before.
Its a lot to take in and quite a shock for you, give yourself time to get your head around what has happened.
For me I am over 50 and my body got into a patten and i had an attack every 7 years where things were ‘fun’ and i had steroids and them things were calm again. Everyone is different so lets hope you have no issues after this. I am sure lots of medical people will be able to give you the facts.
Hi Kate, I had my diagnosis around 16-17 years ago so can’t remember everything from then. I do remember that like you I felt overwhelmed and confused. I guess that the best thing is to find out as much as you can about MS but ……… don’t be alarmed. Everyone’s journey is different and although there is no cure the treatments are getting better ( even in the time since I was diagnosed).
I do remember being overwhelmed by fearful thoughts that I might wake up any morning not being able to walk but I was soon assured that MS doesn’t work like that and 17 years later I’m still walking - admittedly with a bit of a limp and I struggle a bit after 15 -20 minutes.
It’s really good that you’ve already got an appointment with a neurologist ( how long you have to wait can be a bit of a post code lottery). At my appointment I was asked a few questions which I found a bit dismissive at points - but it’s just the manner of some consultants - and it concluded with something along the lines of ‘OK let’s get you started with treatment’.
Probably a good idea to think of all and any questions you want to ask and have a look at the range of treatments
I can’t remember when but at some point I was assigned to an MS Nurse - an important contact for further queries etc .
Hope this helps a bit an feel free to ask me any questions.
Thank you for replying and sharing.
It’s nice to hear I’m not alone.
What treatment do they offer? I feel completely uninformed about a lot of this. I have googled a bit but trying not to overload myself with information that may not be relevant to my personal situation.
It’s great to hear you are still able to walk (although sorry about the limp, I suppose that is the better option though)
Can I ask how MS affected you in the early years after diagnosis? I have 2 children, a husband, a dog, an active job and have just started a university degree. Basically my life is very full (which I love) I am just concerned how this will change things
A long reply some of which might be of no interest but I hope the general picture is useful. I was diagnosed after an episode of optic neuritis during which I basically lost all vision in my right eye. Very scary but the vision returned and for the next 5 years or so and other than my weekly injection ( see below) I basically forgot I had MS. Carried on with everything as normal and had no problems - work , everything. I can’t remember exactly when it was but around 5 years later when walking around town I started having problems moving my right leg. Over time, those problems have got worse but didn’t really hinder me (e.g 4 years ago I was up on the roof of our bungalow relaying ridge tiles and the year before that completely refitting our bathroom- radiator, toilet , bath - everything) until about 3 years ago. Even now, it’s a nuisance but doesn’t stop me too much from doing a lot of things. I do now use a mobility scooter for anything over about 15 minutes of walking and after say an hour or so of gardening I just have to stop for a while and have a long rest. I do my share of housework and will be cutting the lawn later today. None of it is as easy as it used to be ( I wouldn’t dare working on the roof now and refitting the bathroom would take years!) but I manage .
I think that so far I’ve been fairly lucky including in marrying the woman I was with when first diagnosed 16-17 years ago. We are both in our mid- late 60s (in my case 70 next year ) and her children are now grown up but , although I had MS , we enjoyed some family holidays when they were younger.
Fortunately my mind hasn’t been affected ( so far as I know! Actually I do test it from time to time and apparently it’s abilities - cognitive performance- are about average for my age although not so good in one aspect). I do short online courses on FutureLearn which I do enjoy.
I think that When I was diagnosed the number of MS treatments was relatively small compared to now. I was given Avonex - a weekly intramuscular injection that I do myself - can’t say I enjoy doing it and I can feel a little ‘grotty’ the next day but I’ve got used to it and have done it religiously every week for the last 16-17 years.
The injection is the only treatment I’m on but I do ‘sort of’ follow the suggestions offered by e.g Overcoming MS ( a book and website ) which are basically: get enough Vitamin D ( sunlight or supplements), eat healthily - plenty veg and antioxidants , cut down on saturated fats and increase unsaturated fats , keep exercising and ‘meditate/ relax’. It’s not offering any quack miracle cure and was written by an Australian professor who has MS himself - many of his suggestions now also feature on e.g NHS and MS Society websites.
A long reply but I hope it’s useful . Everyone’s MS journey is different. I might have been lucky but I believe that the more recent Treatments are better at slowing down MS and I do think that diet, exercise and relaxation/ meditation help ( certainly, too much stress and consequent inflammation can make things worse ).