Advice for people newly diagnosed with MS – from people who understand

November 7, 2018

We reached out to the Overcoming Multiple Sclerosis community to ask, ‘what advice would you give to someone who has recently been diagnosed with MS?’

We were thrilled with the number of responses we had on both Instagram and Facebook and have collated them below, grouping them into seven broad themes.

If you have been recently diagnosed, we hope that this helps you feel less alone at a very difficult time. Overcoming MS empowers people with MS by providing them with tools and resources to make sustainable diet and lifestyle changes that improve health and enable recovery.

Here are a couple we’ve picked out to get you started:

Live your life! MS affects us all differently but we must choose to either give in and let it consume us or fight back and decide we are in control most of the time. My way is not your way and your way is not mine. This [condition] is a personal one that only each individual can decide how to live with it and don’t let anyone tell you that you are doing wrong – Kaye

Don’t reveal until you have had time to process the information yourself – Kaycee

Advice to those around the person: Just be there, be present and offer empathy instead of advice – Srdjan

you are still you

Don’t sweat the small stuff – you are still you – Keltie

“I have MS, it does not have me” – a mantra to remember for anyone with the diagnosis. You are still you, don’t lose your identity to a diagnosis – Sue

MS slows us down but doesn’t stop us. Keep exercising – you’ll need your strength. Listen to your body, find different ways to do everything you want to do – Nicola

You are still you. You and your whole life need not be defined by MS. Remember that many people with illnesses are actually living their best lives – devoting attention to what brings healing and happiness and not sweating the small stuff – Alison

Live your life as if you don’t have MS – Karin

It's okay to not be okay

It’s okay to be scared and sad about this huge upheaval in your life. Listen politely to advise offered but only follow what works best for you. MS treats everyone differently find your own path –Paulina

It’s okay to be sad, angry, overwhelmed. But you are stronger than this disease so stay positive – Leah

Don’t feel bad when you need to say no to things – Christina

(1) It is OK to process and grieve. (2) Start today to implement OMS (looking at all you are adding to your diet instead of what you are removing) (3) Decide you are in charge of your wellness so start to build a health team (this may include neurologist, nutritionist, massage therapist, strength trainer, therapist, circle of close friends, etc) – Vickie

Think positively

I know it’s scary. But it certainly gets better. Listen to & nourish, your body, rest and recover – Nicola

Try not to be led by fear – Virginia

Don’t stay too long grieving, move to fight mode – Coquito

Multiple sclerosis is not a death sentence. You can still live a fairly normal life. Never ever ever give up 💪🏽🧡🎗- Ebonie

Keep your head up, your positive thinking on and let’s do this – Zlohanka

Never lose hope 🙏🏽💪🏽 – Harveel

Never give up. Never surrender – Mark

Do your best to keep a positive attitude! – Eileen

You can do anything you put your mind to! MS does not have you – Dhina 

Keep the hopes up and live life to the max! You’re stronger than MS! You’ve got this – Vanya

There has been so much research in those of us been diagnosed recently have better odds to live a better life –  Terri

Find support

Do NOT try to hide what you are going through! – Dee

I think firstly it’s trying to find out what gives you a flare up? So it could be… stress, certain foods, over doing it, etc. Get to know your limitations and accept what you can do and not what you can’t. Get what ever help you need whether it’s adaptations in home/work, DMDs or just someone in the know to talk to. That can be MS nurse or a Facebook closed group. I needed all of these and it helps 😊- Jeanette

Definitely get the book Overcoming MS (and follow on Facebook) the book is free [in the UK] 🙂 – Anon

Talk to people, do things in your own time, grab a copy of the OMS book and find your nearest circle for local support 😁 – Karen

Seek someone to speak to professionally. I’d never considered it but [it was the] best decision! – Jess

Get a good, experienced neurologist whose focus is MS. Keep your head up and don’t believe everything on the internet -Anon

I told my children about diagnosis at five and seven years old and they have been my best advocates. They believe I can achieve everything I want – with a smile and a chortle at the ludicrous things MS makes you do. 😃 – Nicola

Laugh every day

To laugh every day either at yourself or others – Rebecca

It’s easy to not laugh anymore. Try to laugh every moment you can –Rodney

You’ll discover how strong you really are. And embrace your sense of humor! – Colleen

Do your research

Read the good & positive stuff (that’s how I found out about OMS) and give it a try!

Become a student of the condition – Conor

Get all the info and support you can – Lynne

It’s ok to cry, get angry and allow yourself to grieve. Then breathe. Read, read and read become more knowledgeable than your doctor. My first read was The Multiple Sclerosis Diet Book by Dr Swank (it’s a heavy read but good recipes). Then along came Dr Jekinek’s Overcoming Multiple Sclerosis written for lay people (easy to read) he too had discovered Dr Swank after his diagnosis of MS. Both changed my outlook on MS – Julie

My advice is to read Overcoming Multiple Sclerosis by George Jelinek  immediately in order to get the best available evidence on MS and to start improving immediately in a wonderful lifelong journey – Valerio

Breathe and research treatment options. Life has changed but still offers great possibility and joy. This is NOT a death sentence! – Leslie

Get the book. Read the protocols. And do it – Wallace

Embrace lifestyle changes

Get onto OMS and fast! – Kristy

Read the OMS book – full of research and inspiration! Join Facebook groups that support the lifestyle changes – have faith you can recover – Mary

Be vegan and eat a whole food, plant-based diet – Craig

So, sensible and healthy diet, vitamin D3 and exercise. Never give up on the exercise – Jill

Follow the diet that resonates with you. Believe you can heal 💜🙏🌻 Isabelle

Ditch dairy immediately. Follow OMS in its in entirety – Farhad

Go whole food, plant-based. There is serious truth in healing from within – J

My husband followed Swank for 56 years, still meandering at 76. Not easy going at all, but still here…. Phyllis

Overcoming MS book… with Prof George Jelinek… who has MS – Venessa

Exercise more than you think necessary. Muscular atrophy is difficult with MS – Robert

Your body is unbalanced and screaming for help. Use your thoughts and foods to heal. And here’s an amazing book – K

Think of MS not as a disease, but a health condition. My health condition has led me to make lifestyle and dietary choices that have brought me better health than pre-MS diagnosis. It has been a blessing in disguise. Education is empowerment – Andrea

If you’d like to help someone who has been newly diagnosed with a free book including a personal message, you can donate to our Christmas Campaign.

5 thoughts on ‘Advice for people newly diagnosed with MS – from people who understand

  1. For someone who was provisionally diagnosed with MS during her pregnancy in 2017, and confirmed by MRI at 6 weeks post partum the above advice is invaluable. I keep being drawn back to the OMS diet and haven’t yet made the leap as it’s so hard to think about and prepare for with a toddler to worry about too. I am an exercise obsessive and try meditate also. Any tips on how people geared up to switch their diet would be welcomed, thank you

  2. Hi Erica.
    In terms of the diet, i think you need to make the changes in a way that fit your life. I stopped eating cheese about a year before i cut out the meat as i knew this would be the hard one for me. I’m sure there are people out there that have made the changes all at once, but that didn’t work for me. It was a process over about an 18 month period for me.
    You may be surprised at how supportive family and friends will be….after all, they only want the best for you right!!
    Best of luck with your OMS journey and don’t forget the OMS community is just a click away.

  3. Thanks so much Virginia, I think I need to do that too as I’ll be stopping things that I love (such as cheese!), and so need to be mindful not to try to everything at once. I set up an account with OMS months ago but haven’t been active until yesterday and have found it beneficial so far. Having MS can sometimes be quite lonely. Thanks again

  4. I really wish I had found OMS when I was newly diagnosed rather than 2+ years down the line. I have felt so much better since I’ve been on the OMS diet – much less fatigue for a start (diagnosed with RRMS January 2016, began OMS May/June 2018). Whilst my husband has been very supportive right from diagnosis, I found it much easier to follow the OMS regime after talking to him about it and giving him links to the site to read up. He now doesn’t pester me to “just have this, once a week/month can’t hurt”. Others have noticed an improvement in me too. I confess the exercise & meditation are harder for me to fit in than the diet but I’m working on that!

  5. I an newly diagnosed – the exercise and meditation elements have been easy for me … I’m really struggling with the change to my diet … just don’t seem to be able to nail it

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