Newly Diagnosed

Hi
I was diagnosed 2 days ago. I'm numb from the chest down and it's still spreading, I'm losing my fingers now. I've been sent home from hospital to await outpatients referrals. I hope it won't take too long.

I am a single parent and the sole breadwinner.
The fear right now is all consuming.
Not to mention the fact that my body is nauseating me when I touch it.

xx

Hi Ellen,

Sorry to hear your news. I was diagnosed in June, and I remember very well how hard the first few weeks were. It felt as if my entire world was crumbling, But 5 months later I am doing fantastic. When I was diagnosed I had little feeling of sensation on the left side of my neck and my left arm/hand. That has mostly passed. I still have very numb/tingley fingers but I can put up with that.

Have you started reading OMS? It's a wonderful book which was really the first bit of hope I felt, and that continues to grow day by day. I know that it is daunting opening a book about MS, but it is well written from a very positive viewpoint. I have felt better month by month. I started treatment a month ago (Tecfidera) and all is going well so far..

You are not alone and this disease is not what it used to be. There is hope!

- Matt

I agree with Matt. It's the worst point when you're relapsing and get a diagnosis, but it get's better. OMS really does make you healthier even without the MS benefits. It's just a much better way of living physically and mentally.

Have you been offered steroids because this can make the relapse symptoms much better. Also, is there an OMS circle near you (https://overcomingms.org/community/find-support/)? It would be good to talk to someone face to face who has MS and can support you.

Hiya,
Thank you for the words of support. I had 3 days of IV steroids at the start of this so now I am waiting. The good news is that my feet are almost back to normal and I can feel a change in my legs but I'm still numb from the waist up and my hands/arms are still getting worse, although very slowly.

I met with some of my local OMS Circle yesterday and am also working my way through the book which I am finding encouraging and overwhelming in equal measures. I guess I just have to ride this rollercoaster and wait for things to steady a bit.

I'm embracing every aspect of the recovery programme I can although exercise is a bit difficult currently, But I've started meditating - I can see that is a skill that will take perseverance but I've little else to do for a while.

Thanks again for the again for the encouragement

Ellen

Glad to hear you are doing a bit better. I sincerely believe that you will keep improving. I have been week by week. I feel borderline great these days, better than I have in a long time. Stay strong. You will have lots of down moments but you just need to battle through it and not let them keep you down.

The fact that you’ve have joined the OMS community So soon after being diagnosed is great,
My MS journey materialised with very similar symptoms to yours but it was 18 years ago and the Dr’s told me I had transverse myelitis and after steroid treatment and rest I can resume my usual life.
7 years of “normal” life and I got more symptoms which lead to my MS diagnosis.
I have been living OMS for around 7years and while there is no right or wrong time to start the “OMS” lifestyle just as long as you start. my immediate friends with MS wish they started the lifestyle when I chose to.
Don’t let anyone make you feel bad about choosing to live better and just enjoy the benefits of perseverance.