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Never heard of NMO? Neither had we!


NMO?  What's that?

When my daughter's brain inflammation was first discovered, the doctor's told us it could be ADEM or MS.  ADEM is when a patient's immune system attacks their brain and/or spinal cord. It is usually an intense but one time attack.  The doctors were hopeful that her case was ADEM, and she could be treated and go on to have a totally normal life.  They warned us that if her immune system continued to attack her body, that instead we would be talking about a possible diagnosis of Multiple Sclerosis (MS).  

My daughter's immune system didn't give up. It kept attacking.  We explained to her that her immune system was like the super hero of her body.  The super hero was there to save the day and attack germs, but for some reason her immune system was on over drive.  That meant her super hero was confused and working too hard.  Instead of attacking germs, it was attacking her brain.  Not cool!

As her symptoms continued and even got worse, a specialist came in and told us that she probably didn't have MS.  Instead she has a disease that often gets misdiagnosed as MS.  She has Neuromyelitis Optica Spectrum Disorder (NMO).  

NMO is an autoimmune disease in which the immune system attacks the optic nerve, the spinal cord and sometimes the brain.  NMO can be tricky because it is not a progressive disease.  Attacks from the immune system can be unexpected and very severe.  There is no cure for NMO.  Yeah, that was not fun to hear.  There are however treatments that help to suppress the immune system and thus help prevent attacks.

Because NMO is so rare, very few people (including many doctors) have ever heard of it.  We consider ourselves to be very blessed to have a doctor that knew that her case was an unusual one.  We have learned a lot through her doctor, but we have also done a TON of research on our own.

If you are interested in learning more about NMO, I encourage you to check out the Guthy Jackson Charitable Foundation at https://guthyjacksonfoundation.org/ Their website has a TON of great information including videos, disease information and lists of doctors.  

Another great resource is the Transverse Myelitis Association at https://myelitis.org/ Their website has resources on several rare neurological autoimmune diseases including NMO, ADEM and others.  

If you are a NMO patient or caregiver, I would encourage you to check out the Facebook groups for NMO.  There are multiple groups and they provide a great source of information and support.

NMO is a rare disease that can have serious implications including blindness and paralysis.  I encourage all NMO patients and caregivers to educate yourselves as much as possible.  You may need to share your knowledge with your neurologist if they aren't well versed in NMO.

NMO is scary, but with knowledge comes power.


 My daughter donating blood samples for NMO research.



 Follow me on Twitter: @BusyMomSchwartz
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