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Totally Confused and Tad Nervous

Hello, Total newbie who who has been stalking the forum but too scared to join. Three weeks ago I was at work when I had a funny tingling sensation in my left leg. I thought at first it was related to having a total hip replacement at 35 after falling from my horse. Two colleagues helped me off the shop floor and by the time I got upstairs to the staff canteen I was in unbearable pain in my back and both legs were feeling funny. I was taken to hospital where initial assessment was sciatica. The doctor then asked if I’d been to the toilet that day and I realised I hadn’t. They did a bladder scan and discovered I’d gone into retention and needed a catheter fitted. It was fitted and the nurse asked if it had hurt and I admitted I didn’t feel a thing and didn’t know she had done it. The Dr reappeared and asked me to close my eyes and tell me what leg he was touching. I couldn’t. He asked me to raise my legs and I couldn’t. It was decided to transfer me to a larger hospital for an MRI to determine if it was Cauda Equina. An MRI showed it was not CE so I was transferred back to the original hosts where I was admitted-still unable to move properly. While in hospital a junior Dr came to do the rounds and asked how long I’d had my diagnosis. My husband picked up on this and asked did he mean MS? Dr said yes and my husband told him I didn’t have one as I’d only just been admitted. When my husband told him he’d thought this too and that my mum has MS the Dr just nodded. I left hospital a few days later with a whole list of appointments. I’ve had a second spinal MRI and have a head MRI booked for the beginning of October. I’m currently experiencing a tiredness of like I’ve never had before, shakes and tingling in my legs and hands along with backache. Before this episode I broke my ankle literally falling over while standing still. I’ve had a few other clumsy silly accidents and now the Drs think they may be linked. I’m not even sure why I’m posting here… I’m just confused, nervous and feel like I’ve been left in the dark with nowhere to go. Sorry if I sound a bit of a moany old trout!

hi kerry

you have every right to be here.

my back is twinging in sympathy.

it is an unusual path to diagnosis but it looks like you’re on it.

nobody in their right mind wants ms but neither do they want lots of random symptoms with no explanation.

it isn’t proper diagnosis until the scans have been read and a neurology consultant actually tells you that you have ms.

at least you will have access to the disease modifying drugs.

good luck

xx

Hello Kerry

You don’t sound like a moany old trout. But I do rather like the expression and I’m going to pinch it!!

As Carole said, it’s been a funny old route you’ve taken to get where you are now. It does sound like the doctors suspect MS.

I’m not at all surprised your head’s in a bit of a whirl. Your recent experiences have been quite life changing by the sound of it.

Have you now regained your sense of touch, your walking, bladder use? If so, even if you still have some residual symptoms, then that’s a good sign. (I assume you’ve had some remission since you came out of hospital.)

Did they give you any steroids while you were an in patient? If you managed to get some recovery, either with or without steroids, that’s a good thing too.

There’s not really an awful lot I can say to help to be honest. I do think writing a diary or a timeline would be helpful. That way you have something to compare with later.

I wish you all the best with your next round of MRIs. You are very welcome here, whether you have questions, want someone to join you in a chorus of ‘it’s not bloody fair!’ (which it’s not!) or just a bit of fellow feeling.

Sue

Crumbs, poor you - you have been having a rough time. I am sorry that you find yourself catapulted into a world of waiting and wondering and send good wishes to you most of all and to your family - it’s tough on everyone, all this.

I hope you get some clarity soon.

Alison

p.s. If it turns out that you do get formal confirmation of MS, that doesn’t necessarily mean that it will take a similar course to your mum’s - for better or worse. There is a wider range of powerful treatments available than were available a generation ago.