Forum

Scared

I was diagnosed on the 9th. I feel like my world is crashing down around me. I’m terrified of everything. Realistically my symptoms were minimum. But now I’m consumed by grief. I feel like ms is going to be a dark cloud over me forever. I’m scared I’ll lose my job. My husband. My daughter. I’m 31 years old and I feel like a ticking time bomb. I was seen by a doctor yesterday who believes that the high dose of steroids and then the sudden stop has caused a massive shock in my system. I feel so weak, so tired. I can’t eat, my mind’s constantly thinking the worst. I’m so scared I’ve lost my self. Before this I was sassy, I was active and now I feel so empty.

Hi Rae867 Sorry to hear about your diagnosis. It’s only been a couple of weeks so I bet you’re feeling as raw as anything could. Rawness will always heal over in time. I was diagnosed in Jan this year and it’s only been in the last month that I feel that I’ve moved on from that raw stage. Although I think it was at its most instense during that first month. There is sooo much info out on the web (some good and some bad) the more info you understand the less the MS becomes the ‘big bad’. Has your doc told you what your next steps are? Dmds? You will eventually get tired about thinking the worst all the time - I know I did! Do something positive to make you feel on control - re-evaluate your life, make changes, cut out the negatives. My symptoms were minimum as well (just optic neuritis) but the dx was such a punch in the gut that it will shake you to your core and you will never be the same. Embrace this change. Do it now whilst things are still raw. Action kills fear. Change and adapt. But this WILL not happen overnight. Give yourself time to breathe then start working on the 2.0 version of yourself. M x

Hello Rae

Hearing the words, ‘you have MS’ is bloody scary.

It’s sometimes different if you’ve been having symptoms and tests for a long time, been in ‘Limbo’ so to speak. Then a diagnosis of anything is a relief.

But having a quick diagnosis can really wallop you, and many people do feel a sense of grief, for the future they’d been expecting, for their relationships that will inevitably alter and just for their sense of self.

Steroids take a lot out of you as well, not just physically, they also have a big effect on your mood and just generally can make you feel close to tears at any moment.

Eventually you will get over the shock of the diagnosis. And probably start getting angry. Many of us still feel bloody furious that MS marched into our lives and changed us, our health and our future.

You have been diagnosed at a much better time than say, 20 years ago. At least now there are a wealth of disease modifying drugs (DMDs) available. And that will probably be your next step as M said. It could be that you find a drug that suits you and keeps disabling relapses at bay for many years to come. Your fear that MS will utterly ruin your life may not be justified.

Use the information available on this site and the MS Trust for realistic and correct information. Also, when you are put in touch with an MS nurse, s/he will hopefully really help you to get your head around drug therapies and how to deal with life now you’ve been given this ball and chain.

The people on this forum will help as well, any questions, thoughts, complaints and moans of fury or self pity are all acceptable. We’ll do our best to help.

Sue

Hello, I echo the thoughts of Sue as well. I know it feels scary right now and the things you are thinking i.e. relationships, kids etc you will just be making yourself worse. Sue is right, there are a lot more effective treatment and research now on MS than there was 20 years ago. My wife was only diagnosed 3 weeks ago although she had optic neuritis 4 years ago. I have seen that with herself and a lot of other people that they make things worse for themselves by over panicking. The best advise I can give as someone who has MS and someone who works in a hospital is seek the best treatment for yourself and try and get along with your normal life - honestly it will even help with your symptoms and make you feel a lot better. And there’s no way you are a ticking time bomb. If you need any advice there are a lot of helpful people on here as Ive learnt and we are always happy to offer. KR