Things I Wish I Knew When I Was First Diagnosed
Last updated: April 2022
Being diagnosed with neuromyelitis optica can be scary, but staying optimistic is key. I remember feeling shocked, lost, alone, scared, with too many emotions ran through my veins. No one around me knew what neuromyelitis optica was and frankly neither did I. It's now been a few years since I was diagnosed and thinking back, these are things I wish I knew when I was diagnosed with neuromyelitis optica.
NMO is a rare disease that affects everyone differently so don’t compare yourself
Depending on the severity and location of your lesions, your symptoms will vary. Symptoms can vary from head to toe, so make sure to communicate everything with your team of doctors. NMO is like a box of chocolates, except for the sweetness.
There is no cure for NMO
No one treatment is a cure-all for symptoms (for now) so be open to all medications for different symptoms. There is usually medication to help prevent the progression of the disease. There are also treatments to help “reset” your immune system. Then, there are targeted medications to help you improve damage done. Depending on your symptoms, you should speak to your doctors about those areas that you need help improving.
Having children is possible
Planning a pregnancy with your team of doctors is very possible and important. With my second pregnancy (in 2015) I’m pretty sure I had NMO (I was diagnosed 2016) and experienced all the symptoms that make sense now. I’m living proof that it’s possible. According to the Mayo Clinic, NMO is rarely hereditary, if that gives you some peace of mind.
Get a good team of doctors
You'll especially need a neurologist who is accessible and willing to listen. Living with NMO means a lifetime of living with a rare disease and having good, reliable, and communicable doctors is a must. If you are feeling judged or like a number in a crowd, keep looking for a team of doctors that knows that this disease should be treated just as real as its rareness.
Don’t stop exercising
If you haven't started exercising, try to if you’re not in the habit. NMO can impact many different muscles that you never knew you used. Get into the habit of walking if you can or even standing and sitting in place. Stretching is also good for you.
Mentally prepare yourself to have an adaptive device
Be prepared with assistive devices in case of any downfalls. I'm not saying you need them now, but when the time comes, you should be prepared. For me, the purchase of canes, crutches, walkers, and wheelchairs came unexpectedly. I didn’t expect to keep progressing, but it happened. Also, check with your health insurance to see if they can help with some of these items.
Learn to read your body and avoid extreme temperatures
For me, heat intolerance is a real thing. I hadn’t realized that my exacerbations were occurring because of the summer weather, or that the extreme cold temperatures of New England were causing me so much pain in my body. Observe what temperature works for your body and try your best to adjust.
Be an open book about your disease to those around you
From my personal experience, I was always an “I can do it all by myself” type of person and was always hesitant to ask for help. But I’ve learned to ask for help whenever I need it. You’d be surprised at how helpful people are when you simply just ask for help. Being open about your diagnoses helps others understand your needs.
Not everyone knows how to deal with a “disabled” person
This includes friends, family, spouses, and strangers. Be prepared to lose and gain people from your life. Accept it, learn from those experiences and continue. You will find your niche.
You are not alone
There are many communities that can help you connect to others that have NMO. There are online groups that are very helpful and judgment-free (contact me if you want some suggestions).
Living with a demyelinating disease like neuromyelitis optica is not a death sentence. Get creative and have the world around adaptive to you!
What do you wish you'd known when you were diagnosed with NMO?
Typically, how much time passes between attacks for you?