Read This If You’re Newly Diagnosed with MS
May 24, 2018 11 CommentsCategory: My Story
Tags: MS, MS Diagnosis, Msers, Newly diagnosed, Support
Congratulations, you’ve joined the club. You know, the one you never wanted to be in – the MS club, that is.
You’ve just got hit with the news and still, even weeks later you can’t believe it.
Terrified. Angry. Confused. Your emotions are running high and well, let’s be honest – they’re flat out out of whack. You likely haven’t wrapped your head around it all. I mean, how could you? You just got diagnosed with an incurable illness.
Well, let’s cut to the chase. You do have MS. So, do I. And you know what – I’m okay and you, my friend, will be too.
With all the chaos that’s been going on, what you need now are the facts. The steps to help you get your life back on track. Someone – who’s been in your shoes – to help guide your next steps.
Here’s what I wish someone would have told me after my MS diagnosis. This is how I would prioritize tackling MS:
1. Let it all sink in – Before you go, go, go, do yourself a favor and take it all in for a second. You’re likely feeling every emotion in the book and don’t know how to handle it – and that’s ok.
Its okay to vent, it’s okay to cry, it’s okay to not even understand what it is to have multiple sclerosis. You’re just starting a journey that can be overwhelming, so just give yourself a break and let your emotions out right now.
You’re not expected to have the answers. You’re not expected to have your next steps figured out. The most important thing right now is to take care of yourself physically and emotionally. So get help – whether that’s immediate assistance from a hospital or doctor if you’re in the midst of a relapse or 1:1 support from your loved one and friends. Take care of you.
2.) Take control – You may not be able to control the fact that you have MS, but you do have control over your reaction to it. After you care for your immediate physical and emotional needs, it’s time to act. MS is a progressive disease so the sooner you take charge the better.
Find the right neurologist – Your neurologist is, in my opinion, the single most important decision you will make so you need to do some work to find the right one. My recommendation: call your insurance company and get a list of every neurologist in your area that falls “in-network”, then research every single one to determine who is top rated and then hunt down appointments with as many as possible. It may take you months to get seen, so just take the first appointment you can get.
You read that right – don’t make one appointment and call it a day. Schedule multiple appointments with different neurologists and interview them all before you settle on one. Picking your neurologist is the single most important decision after your diagnosis so make sure you do your due diligence and pick a good one that you feel comfortable with and most importantly, trust. This is the doctor that will determine your medication – your future – so make sure you get it right.
Get on a medication – With your neurologist, you’ll need to decide on the best medication for you / your MS. Let me be the first to tell you that they all have pros and cons – some with very scary and uncomfortable side effects. You’ll have to weigh those with the advantages, risks or lifestyle implications and from there, make a decision.
As a side note, many medications take months to become effective, so I recommend asking your neurologist about Prednisone (a very strong steroid) in the interim. This medication minimizes your likelihood for a relapse while your meds kick in.
2. Find your support system – You’ve got a neurologist and a medication, it’s time to figure out how you’re going to make it through all of these changes and tackle your emotions that are running high. You need support – and that comes in many different forms.
Friends and family are a given but hone in on who you are able to confide in and most importantly, figure out who is good for what. In other words, you’ll have different needs throughout your MS journey and you’ll need support in different ways. You’re going to want to have that friend who just listens, another one who gives you tough loves and makes you act. Another that’ll just be there for appointments or to hold your hand through rough days. If I’ve learned anything it’s that you need to play to your support systems’ strengths and utilize the people around you to your needs. Everyone who cares about you wants to help you so figure out what their role can be to best suit your needs.
In addition to family and friends, connect to others with MS who are similar to you – ideally someone around the same age. MS is a very different disease today and medications have advanced tremendously so don’t compare yourself to someone who’s had it for 10, 20, or 30 years.
As wonderful as my friends and family were after my diagnosis, there was comfort in talking to complete strangers who could understand where I was coming from. People who could relate to my fears and sadness and who could also put my anxiety at ease with their tips and success stories. Find others – friends of friends or even complete strangers – who can be there for you. As someone who does this regularly for others who are newly diagnosed, I can tell you that anyone who’s been there is happy to help and reciprocate the support to others.
3. Listen to your body and monitor your results – Life after diagnosis is a bit of an unknown. You don’t know how your body will react, how your medicine will take or how you’ll feel. It’s a learning period. It’s your job to track and monitor your progress and gauge what’s working and not working for you.
Perhaps write in a journal and track how you feel, what your body responds negatively to and just be awareness of your body’s reaction. It may take time but you’ll start to see trends and you’ll need to make modifications whether that be to your diet, exercise routine, exposure to the sun or even sleep. It’s essential that you tweak and modify your plan according to how you feel, and alert your doctor of any new symptoms immediately.
4. Know that you’re going to be okay – Everyone says “attitude is everything” and yes, that’s true. But, for me, it wasn’t so much about being positive in that warm and fuzzy kind of way but instead about being determined. I flat out refused to live anything other than a full and active life. I was adamant from the start that I didn’t want MS to get the best of me and that’s been my driving force every since.
Every day you’ll need to make conscious decisions – both physically and mentally – on how you will manage your MS and you need to follow through. No one else can do this for you. It all starts with a clear mind and positive attitude so even if you don’t feel it now, tell yourself you’ll be okay and eventually your head will catch up.
5. Find your motivation – Figure out what is it inside you that drives you – what it is that you feed off of – what makes you tick. Use that – whatever it is – to help you reach your goals.
In the beginning, I was so scared that my diagnosis would halt our plans for the family that I wanted so badly. Many doctors told me flat out not to get pregnant. But, I refused to let my diagnosis get in the way of the baby I always wanted. So I sought out a neurologist who understood my goal and helped me safely achieve it. Our daughter, Chloe, is living proof that life with MS is far from over. Yes, I had to take some risks and precautions (all of which you can read more about on the blog) but it was worth it. She was my motivation – what’s yours?
Write it down. Tell your family. Scream it from the rooftop. You’ll need that motivation when you’re feeling tired, overwhelmed, depleted or just needing hope. It will inspire you to get up and keep going.
I’ll leave you with this…
The truth is that your life will never go back to normal after you learn of your diagnosis. You’re changed, forever. You’ll likely have to manage this for the rest of your life. But, trust me when I tell you that the shock will wear off, you will adjust to your new routine and you will find your new normal. You will be okay.
May 24, 2018 at 3:52 pm
Gawd, you are a good writer. And a smart, compassionate one too. Such good advice that only an MSer can give another. Great job!
May 25, 2018 at 11:02 am
Thanks so much!! Appreciate your note 🙂
May 24, 2018 at 4:00 pm
Wise words, Angie. You are so right — life will and can be ok. MS brings us all new perspective, but we are still the the person we were before and after diagnosis. We just have new information and new challenges and accomplishments. Thank you for sharing.xo
May 25, 2018 at 11:02 am
Absolutely. It’s all a learning experience and we will adjust. Thanks for your note. Hope you’re feeling well too 🙂
May 24, 2018 at 4:54 pm
Great read! I was thankful to have spoken to you so soon after my diagnosis and was so grateful for your willingness to share your experience. As I sit here a little over a year later, with my darling 3 week old son, I too know that things will be ok. Thanks for the reminder.
May 25, 2018 at 11:01 am
Ahh, Julie! So happy for you!! I’m so glad everything fell into place 🙂
May 25, 2018 at 10:58 am
Love this!! Wish I had read this a year ago. I think hearing the diagnosis may be the worse part. My neurologist told me to quit comparing myself to people who have had the disease for years also. Another tip don’t google MS – it will only bring you down :)…
May 25, 2018 at 11:02 am
Yes!! So true. It’s so hard to not generalize your condition but like I said in the article, MS is such a different disease now than years ago… we can control it. Just need to commit to that and follow through!!!
June 20, 2018 at 10:09 am
Just having the courage to begin truly informing myself 9 months after diagnosis. Reading your post is a good start.
June 20, 2018 at 10:31 am
Good luck to you! I know it’s a scary process and taking it one step at a time is definitely the right decision. Wishing you the best
January 25, 2021 at 5:15 pm
Angie! I was diagnosed 3 days ago after a headache/facial numbness a few days after getting my 2nd Covid injection.
Your post was exactly what I needed. I took a screen shot of each step and currently just working on step 1.
I absolutely refuse to let this halt my active and adventurous life! Thanks for this important contribution!