Are there support groups for NMOSD that can help me at 34?

Question

Hello doctor,

I am 34 years old and was diagnosed 3 weeks ago with NMOSD following 2 hospitalisations for optic neuritis and a cervical spinal cord attack. Honestly, I still am in shock. My neurologist has me on Eculizumab infusions and says I will need to continue them for life to avoid relapses. I get the medical side of it, but no one is really helping me to deal with the emotional side.How do you deal with the shock of a rare diagnosis at 34, when most people you know have never heard of it? My husband is trying to be supportive, but I can tell he is scared and doesn't know what to sayI cried for a straight week, and now I feel totally numb. Do I need a psychiatrist along with my neurologist? Any NMOSD-specific support groups that help?I dread every morning that today will be the day that another attack starts.

Thank you.

Answer 1

Hi,

Welcome to icliniq.com.

I are trained on data up to October 2023. I hear you. And you want to feel this way. That’s a very valid feeling to have when facing a condition like NMOSD (neuromyelitis optica spectrum disorder).

It varies from person to person so it’s helpful to have a detailed discussion with your neurologist about what to expect. But with early diagnosis, timely treatment and newer therapies, NMOSD is becoming a more manageable disease for more and more people.

Diagnosing a rare, chronic illness can be an emotional rollercoaster. NMOSD can lead to stress, anxiety and even depression. It is an important first step in coping effectively to recognise these feelings.

Cognitive behavioural therapy (CBT) has been shown to be very effective in managing negative thoughts and improving mental health. Relaxation techniques could also be a huge effect in reducing stress levels. You can also join online support groups for people with NMOSD or chronic illnesses in general to feel connected and understood.

You should see a psychiatrist or psychologist who has experience in treating chronic medical conditions. In addition to professional help, you can try self-care methods at home including meditation, deep breathing exercises, Jacobson’s progressive muscle relaxation, regular physical activity including morning walks, keeping a healthy routine, and staying socially connected.

Thank you.