Forum

recently diagnosed

hey everyone im carly and im 23.

I have just been diagnosed with ms and not really to sure what to feel or think.

It was a big shock when i got told i had ms as my neuro told me he thought something maybe wrong with my nerves but to be honest i never even thought of ms although i think my husband was more shocked then me.

I have 3 attackis that i no of over 2 years is that a good or bad thing? i dont no to anything about ms i am waiting for a letter to get sent to my doctor to tell me what to do next as my neuro wants me to go on medication.

Im scared most as i have a 19 month old little boy and i want to be able to do everything for him as he is growing up.

I have a constant headache and i have trouble with my left eye and when i get annoyed i feel really angry and like my head is going to explode is this all part of ms?

carly xxx

Hi Carly, and welcome to the site

Hearing the words “multiple sclerosis” for the first time is usually a complete shocker because most of us don’t have a clue about it, apart from what we’ve seen on TV or read about. Unfortunately TV shows, magazines and books seem to be put together by people who know nothing about MS so we have some very weird (and wrong!) ideas about what’s going to happen to us. The fact is that there are far worse things to be diagnosed with. Not only are there some really great drugs these days, there is a lot of support from physio and occupational health etc, that didn’t used to be available. So, yes, sometimes we have to deal with stuff that we really rather wouldn’t, and sometimes it’s really hard, but MS is NOT the end of the world!

When you’re ready, have a look at this website and at the MS Trust website to find out more about MS. When you’re reading, please remember that MS is massively variable - no one gets all the symptoms and the ones that we do get vary in severity too. Every MSer is unique.

Just thought of this - someone told me about a video that an international MS society has launched. Have a wee look: it might help. http://www.youtube.com/watch?v=NJzyfR6dbT8&feature=youtu.be

The number of relapses (attacks) that people have varies a lot. Some people have a lot of relapses; some have very few. The severity of relapses also varies a lot. The same person may have a period with nothing happening at all, then have a really busy period when their MS gets very active. It’s fairly common for people to have a lot of relapses in the years around diagnosis, but for their MS to settle down for a while after that.

Relapses cause damage which builds over time, increasing the amount of everyday symptoms and disability. So preventing relapses is a pretty good idea! That’s why your neuro is talking about medication. The drugs that reduce the amount of relapses (and reduce the severity of relapses that still happen) are called disease modifying drugs (DMDs) or disease modifying treatments (DMTs). The best place to get information about them is the msdecisions website - when you’re ready, why not have a look and see what the options are? They aren’t a cure, but they will help to keep your MS from becoming really active.

A constant headache is not nice Have you spoken to your MS nurse about it? He/she might be able to recommend something for it.

You should see an optician (or better, an ophthalmologist) about your eye. It could be MS, but it could be something else - so best to see an expert and get it checked out. Your GP can refer you to an ophthalmologist.

Emotions can be all over the place in the early days. It’s unpleasant, but normal. As you learn to cope with the diagnosis, things should improve. People say that getting a diagnosis is like suffering a bereavement; losing someone close to you, which you have: who you thought you were, who you thought you would be. Learning to accept the diagnosis is not a quick process, and we mostly go through the same emotional stages as in bereavement. Maybe reading about these will help you? Just google “stages of bereavement” for info. If you find that you are struggling, please ask to see a counsellor. Some of the MS Therapy Centres have MS counsellors, so they could be somewhere you could investigate. I saw a counsellor in the early days and it helped me loads. And of course there is this forum - it can help a lot!

The other thing to try and remember is that, while you have been diagnosed, your husband’s wife has also been diagnosed. He will be going through some very difficult emotions too. Try and talk. Don’t shut each other out. Some people find it hard to do that, and that’s fine - we are all different, but don’t hide from each other. A problem shared and all that…

There’s a heck of a lot to try and take in. Hang in there. You’ll make it through.

MS is NOT the end of the world. Promise.

Karen x

Sorry, I meant to say - the pale pink font you used in your post will be quite hard to read for some people on here with visual problems. Best to stick to something darker.

Kx

hi carly

welcome to the site

it must have been a big shock to be told its ms, some people do have, at least an inkling that it could be ms and i think that makes it a little easier although i imagine there’s still that sense of bereavement as sometimes we spend so much time in trying to prove it to people that we dont stop to think how we would feel if it does eventually happen. i have had diagnosis of fibromyalgia, likely ms, CFS/ME and now its the “its all in your head” one which happens too often.

i think the way i look at it is that you’ve already lived with it for a while so you know how it affects you at the moment its just that you now have a name for it.

i can understand about the headache though, i had a constant headache that lasted for 9 months and made me very irritable and moody, but its like the phrase “bear with a sore head” yes you may be angry but you have got sore head and other people cant understand it because its not like a normal headache that can be cured by pills, nothing ever worked for me, it went when it wanted to go but as you’ve got your diagnosis it may be that they can offer you steroids which will help to get rid of symptoms quicker rather than just waiting for it go like i had to.

i wish you well and hope you get some meds sorted soon but do keep popping in for support if its only just to have a good old moan! we all do it.

love mandy xxxx

Thankyou for your helpfull comments helped me see things a little more better now and also not feel so negative thankyou.

carlyxxx