a symptom diary for the newly diagnosed with NMO

Tips For The Newly Diagnosed

Last updated: January 2023

It was the fourth week of September, almost three weeks of being stuck in a hospital room alone and in pain. The doctor told me to call my parents to visit in the afternoon so she could speak to us together.

Newly diagnosed with NMO

That was the day I was diagnosed with NMOSD. We asked what it was, but the doctor had no idea. All she said was it’s not a long-term thing. But a week later, I was diagnosed again with the same disease, but this time, I had a proper explanation of what my life would be like for the next few years.

Even though a doctor can explain what the disease is, what treatment you should be on etc., they cannot teach you how to handle your diagnosis and your new life. Only you can, but there are some tips I wish someone had given me when I was diagnosed.

Tip #1: The symptom diary

Write down all your symptoms. It can be your very own ‘symptom diary’ or a note on your phone. Either way, a good tip if you're newly diagnosed with NMO is that you should note down all your symptoms. This helped me understand what my triggers were and why I was suffering. I also kept a note of everything for when I met my neurologist. If people ask me what my symptoms are, I won’t remember all of them.

Tip #2: Research!

Another tip: do your research! Connect with other people with this disease, so you do not feel alone. Going through a hard time alone makes it ten times harder. But, even though this disease is rare, there are people out there who understand your experiences. You just need to look for them.

You may have to help guide your doctor

By doing your research on NMOSD, you can also prevent bad experiences with doctors from dismissing you. Our disease is so rare that even doctors sometimes have no clue how to treat us or our symptoms. There will be many times when you will have to educate a doctor that is supposed to help you.

Tip #3: Prioritize all aspects of YOU

Make yourself a priority. Your body is attacking itself. Reduce stress and anxiety. Remove toxic people and situations. They will just make your life more difficult than it already is. Stress is a big trigger of chronic illness.

Another tip for people newly diagnosed with NMO is to turn to something you love when you are upset. Start a new hobby, such as painting, coloring, baking, learning a new language, or even writing down your feelings, so you aren’t holding everything in.

Tip #4: It's okay to ask for help

If you feel that mentally you aren’t getting any better, get some help. Sometimes we think, ‘oh, I’ll get better. I just need some time.’ And then weeks go by, and we’re still not improved. That’s when you know you need to speak to someone. It doesn’t matter who it is, a trusted friend, a therapist, or a doctor. Anyone! Just let it out.

Medications can be your friend

Anti-depressants have a bad reputation for some reason. I was always told to stay away from them and that I’ll only get worse. That isn’t true. Maybe you’re just on the wrong ones. I started antidepressants a few months when I was still newly diagnosed, and it was one of the best decisions I made. Mentally I am so much stronger than before, my anxiety has reduced, and I hardly ever cry unless it’s something really upsetting.

Tip #5: Be mindful of what you eat

You don’t have to drastically change your diet all of a sudden, but it would be a benefit to add anti-inflammatory foods to your diet.

I used to drink a smoothie every morning whilst I was on prednisone. It consisted of a cup of kale, two sticks of celery, one beetroot, a cup of mixed berries, one carrot, half a cup of mango, and some orange juice or water. I also cut out gluten, dairy, and refined sugar. I did this diet for around six months, and I still notice if I have gluten, dairy, or refined sugar, I tend to flare up. I hope these tips helped!

Lots of love,
-Hali

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