Things Only NMO Patients Will Get

I missed this year’s NMO patient day but absolutely loved seeing all the posts and photos of past and new attendees connecting with each other. It’s what has inspired this week’s post that only NMO patients might appreciate.

1. (Upon seeing you in person) “I’m so glad you’re feeling better”
NMO patients always sympathize with the inevitable prednisone use, which causes weight gain including the dreaded “moon face”. Those who aren’t familiar might assume the weight loss or return to normal weight means you’re healed from the disease, but that’s just not the case. Prednisone is used to treat flare ups or as a precautionary measure.

2. “But you were walking yesterday. What’s wrong with you today?”
NMO symptoms can flare up and cause different mobility from day to day or even from hour to hour. This is tough for others to understand who don’t realize how symptoms work.

3. Having to cancel on your friends and family…again
This is related to #2 and the unpredictable nature of NMO. If you’re like me, you’ve probably had to make excuses that seem easier to understand like “my kid is sick” or “I’m stuck working late”. It can be heartbreaking for patients when the invitations stop coming because they assume you’ll probably have to cancel anyways.

4. The stubbed toe syndrome
Right now 3 of my 10 toes are badly bruised. That’s because my mobility gets thrown off, I walk into things because of the numbness and vertigo is sometimes a problem.

5. Healthcare is expensive
Even if you have extended health coverage, having a medical condition is very expensive. The medication alone can cost a fortune and that’s before any additional maintenance care like massage therapy, acupuncture or doctor appointments. And most patients can only work limited hours or survive on disability earnings.

6. We know how to navigate the medical system
This is a broad statement that might include best time to call for an MRI, the nicest nurse for blood work or even best time to pick up a prescription from the pharmacy. Most of us are even on a first name basis with our neurologist!

7. Food is our friend (and our enemy)
Eat what makes you feel good but that usually means really restrictive diets. Eating with others fuels our sense of belonging but people can get weird about our food limitations.

4 Comments

  1. Abby

    GfNo.s 2, 3 & 5 the ones I totally relate to. It’s been 2yrs for me in recovery, but family believes I’m cured. Wish aid and support could be offered without being called a liar. They may not say it straight out but they do with body language, facial expressions & double sided comments. Feel good though gotta keep positive.

    Comment by Abby on March 16, 2016 at 3:45 pm

  2. Jenna

    Hi Abby. Thanks for your thoughts. Disease has a way of sorting out those who should and shouldn’t be in your life. I’m sorry to hear that people think you’re a liar. You stay positive too!

    Comment by Jenna on April 5, 2016 at 2:17 pm

  3. Shirley

    It’s so good to come across this blog. I was diagnosed in 2011 and was told by by neurologist not to research NMO so I listened. So now I’m playing catch up to find help and information that would have helped. I live 45 minutes outside NYC and looking for a great NMO specialist. send all information to shirley_dou@msn.com.

    Comment by Shirley on April 16, 2016 at 6:32 pm

  4. Lelainia Lloyd

    Hi Shirley! Do you know there is an NMO group on Facebook? THat is a great place to connect with other NMO patients and find out about specialists in your area. Also, the GJF has an NMO app that is FREE to download and comes in both apple and android versions. It has a tonne of information and is super helpful. THanks for connecting!

    Comment by Lelainia Lloyd on April 28, 2016 at 5:06 pm

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