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Newly diagnosed & scared

Hello,

What a whirlwind of a week I have had. It all started with pain in my legs, an achy feeling but random sharp pains occurring from my bones, like knees, ankles & under my feet. Anyway I persisted with the pain taking ibuprofen as I had been on a trip with friends the weekend before which involved a look of waking. I just assumed I had over exerted myself. Anyway every so often when sitting down I experienced a vibration sensation in my bum, the first time it happened I thought I was sitting on a phone! This sensation then became more frequent & the pain in my legs became unbearable. I then saw my doc, she tested my reflexes & my anus musles & refereed me to A&e to see the orthopaedics. I spent the next few days in and out of A&e, they suspected caurda equine syndrome. I was transferred to another hospital for an MRI, but this showed showed my already slipped disc pushing on the nerves, I was then sent home.

Things got got serious when I couldn’t use my bladder, I couldn’t find the muscles to pee, I was then emitted to hospital & had two MRI scans, one of my full back & the other of my brain. I have inflammation on the lower part of my spine, a considerable amount in my neck & a little in my brain which controls balance & eyesight.

I have spent the last five days in hospital and received steroids via the vain for three days. Both my bladder and bowels have recovered and I am now resting at home until I have my treatment appointment. I still have the pain in my legs but at least I can use my bladder & bowels.

what happens next? What treatment are they likely me to put me on, how long will I be off work for? Any idea what type I have? I am so scarred, you advice is so appreciated.

fi xx

Hi Fi,

Welcome to the club no-one wants to be in.

Sorry to hear you’ve had such a tough time. You were diagnosed within a week!? Thats incredibly quick! They took 3 years to diagnose me. An early diagnosis means you can start treating it with DMDs sooner though.

When you say the MRI showed inflammation, do you mean there are inflamed lesions?

You will have so many questions…many of which the answer will be ‘how long is a piece of string?’…ms is unpredictable and different for every one of us.

I will try my best to answer your questions…

If you have had a definitive diagnosis of ms, then you should have already been referred to an ms nurse, if this hasn’t happened, find one, they will be able to help you answer many questions and help you plan and make your way through the ups and downs you are going to experience whilst you come to terms with this new ‘thing’ you have to live with.

Try and get a neurologist who is an ms specialist (just my advice), access to a bigger drug cabinet and better knowledge of trials/treatments available.

Only the neuro will be able to diagnose type of ms, but if a person has an episode then return to ‘normal’ or ‘near normal’ with little or no residual disability, that would indicate relapsing remitting.

The treatment they will put you on is one of the DMDs (disease modifying drugs) used to slow the progression and frequency of relapses. They range from self injectables, tablets to infusions in hospital.

How long will you be off work? Erm…good question and one only you will be able to answer, I’d certainly take a few weeks off to recover from the steroids, let alone the hospitalisation and time to get your head round the diagnosis.

I hope you have a good support network of family and friends who you can lean on.

Fortunately I have not been hospitalised due to ms and have managed to continue work through my relapses (I will no longer though as what I really need is rest) unfortunately, every time I’ve relapsed I am left with further residual disability.

I was diagnosed back in June last year, it has been an emotional roller coaster for me and I think I have only just (Feb) come to terms with my diagnosis. Big hugs for you as it IS a journey, your journey, try make the best of it.

You will find loads of support on here, any questions or if you just need to vent and have an empathetic ear then use and kind, random people who are travelling a similar path will support you best they can.

Be kind to yourself

Nikki

I should have said…

Its a part of your journey…live life as you were, carry on…ms doesn’t to define you.

Nikki xx

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Wow! That is a very unusually quick diagnosis! The neuro must`ve been on the ball!

I am wondering if all the odd sensations are down to your slipped disc and maybe not so much MS?

Your question are difficult to answer, depending on the type of MS you have.

And how long you are likely to be off work…that depends how you feel and react to meds.

You have a lot to take in, assimilate and study. Give yourself time to do this. You may find that your moods go up, down and all over the place. Pace your activities, allowing rest in between busy periods.

Keep coming here and we`ll do our best to support you hun.

pollx

Hope you are feeling better in yourself today

The MS club has no perks just kind people who care

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