Forum

Living with a new diagnosis/symptoms

Hi All,

I’m new to this forum and am not totally sure how it works or what responses I get but I’m going to give it a go.

Like the forum I’m also ‘new’ to MS and living with the symptoms. My husband was disgnosed in April 2012 following a episode in February that left him hospitalised. He suffered many practical symptoms such as double vision, loss of balance and co-ordination, loss of grip, numbness, slurring of speech. I’m sure I don’t need to go on as I’m sure many of you know how MS manifests itself.

What I’m finding difficult to deal/cope (note sure what word to use) with is the emotional impact it has. Both on my husband and I.

The most noticable this is his moods. He becomes disproportioanlly angry and small things. He goes from 0 - 100 in seconds and calms down equally as quick. I’m not sure how to react. I know its the MS as calming down so quickly is unsual for him but I find it difficult to deal with what can be his agressive manner. Are there are practical tips to help him calm down or stop it esclating? Is there any tips of helping him control it?

He is currently having a relapse. I thought it would become easier to deal with when it happened again as we actually know what it is now but I still feel my heart break watching him suffer and not being able to help. He is fighting through and is determined to carry on working even though he is at the same level as he was when he was in hospital last time.

Does it ever get any easier?

Hi

Welcome

THough I am not diagnosed I feel qualified to answer. I have been dealing with symptoms for a long time. And, the other person this affects as much as me, my husband, has been also dealing with my symptoms. Does it get easier? You will learn how to manage and you will learn what works best for you.

I have to remember not to take my frustration out on the nearest person, which happens to be my husband and he has to do his best to remember that even though I look “fine” I have challenging limitations due to this condition.

I found that knowing as much as possible about my symptoms helped me to take control. Not having a diagnosis (see my profile for any further info about the info we do have) makes this challenging but I learned what I could about my specific symptoms from reputable sources such as the MS society, MS Trust, MS Resource Centre. The forum has been an invaluable source of information and support.

Best to you and your spouse.

Tu

Hi Dazzle

firstly let me say how lucky your partner is that you are there to support him and are trying to find out information and help.

Even if MS was suspected getting the news is a grieving process - life won’t be the same, the plans you have may have to change, the things you enjoy you may no longer be able to do but that doesn’t mean you can’t live a full and healthy life as a lot of people on this forum will say. Nonetheless it can take time to digest. How do you feel your partner dealt with the diagnosis? I ask because perhaps some counselling might help him. Is he speaking to anyone about it - ie on a forum like this to share difficulties. Is he speaking to you or family or friends about it. Anger and flying off the handle can be a natural reaction when we’re scared, when things are happening that are beyond our control.

Be there to reassure and support him; read resources and information together. Think about not what he can’t do but what he can manage and what help he can get to improve his rehabilitation ; ie physio, dietition, yoga, aids for walking etc. Being in control and being able to do something to help yourself can also make a difference if he’s feeling very negative about it.

I’m not diagnosed yet so can’t add much more but I hope your partner in time learns to control his anger and come to terms with his diagnosis and realise he has a wonderful partner who is there to support him all the way.

Wishing you both the best.

Reemz

X

Hello, and welcome to the site

You’ve had some great advice already which I wholeheartedly agree with.

Getting your head(s) around a diagnosis on top of dealing with new, scary symptoms is an emotional rollercoaster so seeing a counsellor can make the world of difference. It certainly helped me. Learning about the disease also helps a lot of people: the unknown is scarier than the known, and if someone only knows about MS from some of the rubbish shown on TV, well, that’s even scarier! So, learning good, objective info can be a big help - but only when you’re ready because the publications on here and on the MS Trust site have to cover every possibility which means that there is a lot of not very nice stuff in there which makes people think that their future is pretty bleak. The truth is that no one gets every symptom and the vast majority of us don’t have bleak futures at all - instead we manage to have fulfilling, long and happy lives.

So, your husband’s emotional outbursts could be the result of fear, anger and sadness about his diagnosis and about his future. A counsellor will help with this. It’s also possible that his MS is actually causing these outbursts - it does sometimes happen. If this is the case, then there are meds that can help - your neuro and/or MS nurse can advise.

I was diagnosed 14 years ago. My husband and I have been through it all together and, although it’s not always been easy, it has become easier overall in that there are fewer surprises, my symptoms are well generally managed with meds, we understand each other and MS things better and are much better able to cope with whatever MS (and life) throws at us.

So hang in there. The first couple of years after diagnosis are arguably the toughest time - it will get easier.

Btw, is your husband on disease modifying drugs? He is certainly eligible for them and they can make a significant difference to relapse rates and severity. If he isn’t, then you need to be asking why not (loudly and firmly if necessary!). Same goes for meds for symptoms - there is a lot of stuff that can help - so make sure and ask.

Karen x