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Newly diagnosed

Hi,

I am newly diagnosed. I have heavy numbness from under the breast to my toes, the tight banding feeling all over and slight pins and needles everywhere. I feel fortunate i can walk, have bladder and bowel function.

My worries are that my senses in my legs wont return. My balance is getting better, trying to strengthen m muscles. Im struggling to understand why i walked into hospital with numbness from knees to toes and now its much worse and most of my body- despite IV steroids…

I have a few questions that id be grateful if anyone could share their experiences.

Has anyone had experience of this where senses return?

How long will an attack usually last?

Im on steroids and in hospital, coming out Wednesday- what should be next?

Can massage improve the senses?

How often will the attacks be?

Sorry if they are stupid question!

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Hello

Nothing is a stupid question.

Welcome to the forum. I’m sorry you’ve had to find your way here, but now that you are, get comfortable, ask what questions you have, and if we can, someone will at least try to help.

What you’ll come to understand is that a relapse lasts as long as it pleases. No one can put a time on it. Being in hospital I assume you’re on IV steroids; people tend to expect that the steroids will ‘cure’ the relapse. Unfortunately they don’t, the point of steroids is to shorten the relapse. And they are unreliable. Sometimes the relapse will start to improve quite quickly, other times it won’t. There is no saying that when you entered the hospital your relapse was at its worst, it could just have carried on getting worse all the time.

As for how long the symptoms will last, what tends to happen is that they slowly improve over a period of weeks or even months. One day you’ll wake up and realise that you can feel and move your toes a bit better. Or that you can do something that you’d been unable to do, whether it be lift your leg up to put your socks on easier, or walk further and easier.

Massage might improve things, or you might find that you can’t stand to be touched. You’ll discover soon that everyone is different. You just need to find out what your MS will be like.

I assume that the next decision you’ll have to make will be which disease modifying drug you could/should take to ward off further relapses. You should get some help from an MS nurse or your neurologist with this decision. But once you’re out of hospital, come here and ask for help in finding out about the various drugs. You may already have been told what your options are.

Best of luck with the next few days in hospital.

Sue

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massages can be blissful or they can be horribly uncomfortable.

aromatherapy massages are gentle and soothing.

sports massages are intense.

the last one i had made me ask her to stop.

so she gave me a polystyrene cylinder about 3 feet long with an 8 inch diameter, saying that if i roll my legs on it, it will do the same job as a massage.

it bloody hurt like hell!

my son uses it though, he is mad on cycling and it helps his aching muscles.

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Thankyou so much for your thoughtful answers. They have really helped me start to process things and realise how different this can be and how im just going to have to relax and see… Yes IV steroids and now on tablets- 60mg. I’m seeing consultant tomorrow so will hopefully find out when I will see NS nurse etc. He’s mentioned DMD’s and I’ve had a little look but they seem like a minefield! I will be back with more questions for sure!

Hello again

Once you know which disease modifying drugs (DMDs) the neurologist believes are available for you, you can look at the details for each on https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid

And use your MS nurse as a very valuable resource. They tend to know the ins and outs of the drugs and will help you to make a decision as to which drug would be best suited to you and your lifestyle.

Sue