ADEM Vs NMO (Devic's disease) - anyone heard about this?

Hi All, Hope everyone is doing fairly well?

I am feeling a bit over-whelmed right now. This is the latest disease they are now testing Brian for: (NMO) Neuromyelitis Optica – Otherwise known as Devic's Syndrome: In this disease, the patient develops myelitis (inflammation of the spinal cord) and optic neuritis (inflammation of the optic nerve).

His Neurologist will only know once the latest blood tests come back. It’s prognosis is worse than ADEM (so we are praying it’s not this NMO.) He fell twice yesterday and could hardly get up stairs to his bed. He has severe double vision, muscle spasms and weakness in the muscles especially legs where they literally collapse. I had to call the ambulance 3 weeks ago on a Thursday evening when he collapsed and hurt himself and was unable to use his legs at all to get up. It was very scary. By the Tuesday he was discharged, MRI showed more lesions on brain and spinal cord, 5 days of steroid drips and he was sent home.

He has been medically boarded for 6 months pending his condition and recovery. He cannot work in his condition, and he is only 44. :-( Would be interested is anyone else in this group has had this diagnosis?

Wishing you all strength and healing!


Hi Belinda,

They talked a lot about NMO at the symposium last weekend. And the good news is that there is actually a lot of research (both scientific and pharmaceutical) going on for NMO.

I suggest you check out for more information and connection with research/doctors in that field should it come back positive for NMO.

Best to you both,


Hi Lauren

I have the Myelitis webpage as a favourite, will definitely go and read up on the information they have there.

Thank you so much!



Hi Belinda I have not heard of the terminology you are using but I do have optic nerve damage as well as Oscillopsia from the ADEM . Everything jumps up and down and I had serious falls for several years misjudging steps, curbs etc. Currently it has affected my right eye although I have 20/20 vision I am almost blind in this eye. I take so many meds it is hard to know which single one helps . I believe that the prednisone helped initially. The effects of ADEM are on going. My best wishes to you and your family. Blosom

Hi Blosom

Shame sorry to hear about your eye issues. I know what my husband is going through so feel for you terribly. When he stands up he has to balance for a few seconds or even minutes before he is able to start walking. The heat is affecting him terribly. I believe NMO and MS are very similar yet not when it comes to treatment and progression of the disease. MS is slow whereas NMO can hit you badly and the effect can be quick and permanent. I have been to the Myeltits website but unfortunately there is really not much in the way of solutions yet. Its treated much the same as ADEM, with steroids so help lower the immune response. When attacks occur steroid drips also. Really not much good news out there on NMO at all, they say they can stop the progression, but not in all cases and not 100%. Just found a colleague in my own company who's husband was diagnosed with MS in 2001. Finally 2 years ago she went to a top Professor of Neurology in SA and he diagnosed her husband with NMO. Sadly to late to stop the disease, he is already paralyzed from his chest down with limited use of his hands. Very sad...

Praying for everyone suffering from these types of diseases, keep faith, stay strong and positive, and we will beat this!