Neuromyelitis Optica

New diagnosis and before diagnosis
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i have had an appointment with a neurologist to discuss the results of a recent MRI scan. At the appointment, he explained that I had a new area of active inflammation on the spinal cord which was consistent with MS (this is my third episode). He also said my presentation was slightly unusual, but didn’t say why.

I had a raft of bloods taken and will have a lumbar puncture in January.

Today I received a copy of the letter the neurologist has sent my GP which mentions possible diagnoses of either atypical multiple sclerosis or a form of neuromyelitis Optica. He made no mention of NO (Devics disease) at my appointment.

Neuromyelitis optica was considered 3 years ago but ruled out via blood test. Obviously I am very worried it has been mentioned again. Is it possible to have a negative test and later have a positive test? What information will the lumbar puncture provide? Am I likely to have a definite diagnosis from the lumbar puncture?

I am really struggling with being in limbo (6 years since first symptoms) and with having to worry about possible NO for the second time.

I would appreciate any guidance or experience on any of this. Many thanks :slight_smile:

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I was tested for Devic’s disease too in the distant past (does bloods being sent to Oxford ring a bell?) to see whether I had that as well as or even instead of the MS I had already, but I didn’t. I have a feeling there is someone on here who does have Devic’s, but I cannot remember who.

I don’t know much about it, I’m afraid. I am sorry you are having such a long and frustrating wait to find out what is the matter.

Alison

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Thanks for your reply Alison. I think you’re right - the lab in Oxford is the only one in the UK that does this test. When I read about Devics, I don’t think it sounds like me, so I’m fairly hopeful I don’t have it. I guess I just need to get my head round the waiting!

1 Like
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The blood test for Devics if negative indicates that Devics is unlikely but not impossible. If you LP is positive then MS will be more likely as in Devics the LP is usually negative for Oligonical Bands.

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That makes sense Moyna, thank you :slight_smile: