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Diagnosed today with MS unexpectedly

Hi all,

i really don’t know what to say, I have just been diagnosed wi MS today and don’t really know what happens to me I was in shock that my mind and head went blank as the doctor was telling me what’s what. I really don’t know what to expect I am only 28 and this is going to change my life for ever.

the doctor has prescribed me with a 5days steroid course but don’t see him again for 2 months and the nurse I seen after the doctor only toke a wee sample of me then told me to go get my medicine and was not giving any info or didn’t even think to ask about what to expect or what I should do from now because I couldn’t think straight A’s was in shock.

What’s gonna happen now I know everyone is different but is my life gonna be different now

Hello, I’m 27 and recently diagnosed to! At first it was a shock and I was consistantly on this forum thinking how bad is this going to get. After about a month I’ve grown to except it. In a way it’s a relief finally knowing what was causing all the symptoms. If you have relapsing remitting they will probably get you to pick a medication. I was given three options and chosen lemtrada although I haven’t started this yet. There is no cure but starting a treatment as soon as possible will reduce the amount of relapses therefore damage to the central nervous system xxx Amy x

Hi, Yes some things will be different but most things will stay the same. You have still got a life but now you will have to share it with MS. It doesn’t mean that you have to tear up you whole life plan. You can still achieve your hope and ambitions. You can enjoy life. Just like before diagnosis, it means recognising opportunities and taking what’s on offer. You can’t let MS dictate what you can and can’t do. You’re still the same person you were last month. I know you’ve had a shock and you feel knocked down. But as Amy says, like every other blow you’ve overcome, you’ll get used to it, get back up and carry on. You won’t be alone though. There’s a huge amount of practical experience here and you can ask anything you like. You’ll find a great deal of empathy and even make friends on this Forum. Starting today. Best wishes, Anthony

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Hello

It sounds like you’ve had a hell of a shock today and it’s going to take some time to get your head round it.

There are a number of helpful websites where you can get reliable information about MS, obviously this website is one, and the MS Trust is the other. I suggest you start with https://www.mstrust.org.uk/understanding-ms/newly-diagnosed-multiple-sclerosis Then there’s Types of MS | Multiple Sclerosis Society UK This will give you information about the three major types of MS, I assume that you’ve been diagnosed with the most common, relapsing remitting MS (because they’ve given you steroids which help to shorten a relapse).

Assuming I’m right, and you’ve been diagnosed with RRMS, the next step will be for you to hopefully start to take a disease modifying drug (DMD). These are supposed to reduce the number and severity of relapses you might have. There are a large number of available DMDs. Amy said she’d been given the choice of 3 drugs and picked Lemtrada out of those 3. Have a look at https://www.mstrust.org.uk/understanding-ms/ms-symptoms-and-treatments/ms-decisions/decision-aid The various options are all detailed. As with all drugs, they come with potential side effects. DMDs typically have the potential for the worst side effects along with the higher expected relapse reduction rate. Your choice is likely to be limited as Amy’s was. It will be limited by the severity of your MS, the prescribing centres which have been set up locally, your neurologists preference, and lastly, by your own choice. Your MS nurse will help you to understand the options open to you.

You said you’ve been given a 5 days course of high dose steroids. The point of the steroids is to shorten the length of the relapse. They aren’t a cure, and they won’t work overnight. But over the next days, weeks, even months, the steroids will be damping down your immune system which has caused the relapse and hopefully your symptoms will improve. However, high dose steroids themselves come with side effects. The first and most noticeable is a vile metallic taste in your mouth. It’s a good idea to take the steroids with milk, drinkable yoghurt or something else that will coat your mouth a bit. The taste stays with you for most of the day, even though you take all the pills in one go in the morning. By the time you eat dinner the taste should be better. I’ve found that eating mints through the day, or chewing gum helps with the taste. Chocolate also helps. You might find that you get heartburn or indigestion as a result of the steroids, taking something like Omeprazole or failing that, Gaviscon, should help. You’ll also probably have trouble sleeping while you take the steroids. They have a teeth grinding type of effect, so you may feel a bit agitated as well. All of these problems will go very quickly once you’ve finished the steroid course. So don’t panic, it’s temporary.

In terms of how MS will effect your life, hopefully, once you’ve got over this relapse and started a DMD, MS will be with you always, but it won’t impact on your life a massive amount. You will still be you, all your plans, dreams and ambitions will remain possible, just as Anthony said.

You are most welcome to come here for any information you need, any questions, thoughts or ideas you have. We’ll do our best to help if we can. Or if you just want to let off steam to people who’ll understand, then we’re here for that too.

Sue

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Hi all

thanks for all your comment and support, first of all the steroids I was given for five days was really horrible and feel like I got no benefit of them at all other than the side effects but having it with milk did help with the nasty taste.

Also so I have been to see the MS nurse and she confirmed that the neurologist diagnosed me with ppms and am due to see him again this month hopefully get better meds and feel better I just want to be able to live life normal I don’t want nothing special I just want to carry my kids and play with them without having pain and without the stress this is caused me. In a way I feel better that I actually know what’s wrong with me now and know what’s causing all these symptoms as I felt like I was going round and round with my gp not knowing what’s going on.

Again thanks all for your support it really means a lot to me as I feel lost at the moment.

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well this is a mixed message.

firstly commiserations at being diagnosed with ms.

secondly congratulations at escaping from limbo.

in a nutshell - it’s life jim but not as we know it!

(borrowed from star trek)

you need to care for yourself.

eat well - whole foods, avoid processed food.

exercise - pilates is excellent for the core which is vital for a strong body.

you have a range of experts that you can call on.

your ms nurse can put you in touch with occupational therapy - the OT will walk you through your home looking for any potential danger. then provide grabrails and the like.

physiotherapist who will check your posture and give exercises to improve this.

stay happy - a good mental attitude is what you need.

now off you go to live your life!

Hi Anon,

That diagnosis has surely got to be the worst part -a real kick in the teeth - maybe, ? I don’t know as I’m only 3 weeks labelled and struggling every minute of every day. I found this forum and am glad that I;m not alone although we all are and look for any comfort from like minded people.

take care and PM me anytime , meanwhile back to Valium and Vodka for me .

Love Lib

I said to my GP that I just DID NOT want to know ,and didn’t want to see it in writing . I swore like a football hooligan at my neurologist and have deep personal shame over that but I’ll get over it {the swearing that is} not the rest !!