Hi,
Bit more than a month ago my mom developed burning sensation on her back and stomach, she went to a doc but he said its nothing lifetreatening and she waited for for her turn for the tests, it was like this for a week or two.
Few weeks ago the burning sensation became too much to bear and my mom went to a hospital.
They took her in and the next day she had issues walking and day later she couldn't walk on her own at all.
After a few days they put her on some steroid IV thing for 5 days and now, couple of weeks later she slowly started to walk again but lost lot of sensitivity in her legs and her skin still react to touch with pain.
Couple of days ago doc come, gave her envelope with test results and told her to wait one more day for another doc to interpret what it all means.
She called me scared and asked to google all this and what it all means and when I started to google I almost lost it.
There were some oligoclonal bands in her cerebro spinal fluid, Antinuclear antibodies ANA, oligoclonal protein IgG Type2*
and something that freaked me out, in her blood test there were aquaporin 4 antibodies.
I searched and searched but from what I could learn those are synonymous with Devic's syndrom.
However, instead of Devic's Syndrom the doctor labeled diagnose under code of G36.8 as Other specified acute disseminated demyelination.
My sister was talking with a doctor and also was worried about NMO, from what we googled mom would need treatment but doc said that until second attack comes there is no treatment apart from rehabilitation and second attack might not come at all, she also didn't called it Devic's syndrom but NMO spectrum diseases (its a rough translation english is not my native but she was ambiguous).
I googled and googled and yet I cant seem to find those aquaporin 4 antibodies in any other disease or context but this horrible NMO thing.
Are those aquaporin 4 antibodies synonymous with Neuromyelitis Optica or there are other cases when they can appear in tests?
If its only NMO thing why no Devic's disorder diagnosis then?
What treatment my mom should receive in case its Devic?
Technically she is in hospital that considered top notch here and specialises in MS and Devic syndrom but getting doctors to talk is very difficult so there is no clear understanding of the situation.
Bit more than a month ago my mom developed burning sensation on her back and stomach, she went to a doc but he said its nothing lifetreatening and she waited for for her turn for the tests, it was like this for a week or two.
Few weeks ago the burning sensation became too much to bear and my mom went to a hospital.
They took her in and the next day she had issues walking and day later she couldn't walk on her own at all.
After a few days they put her on some steroid IV thing for 5 days and now, couple of weeks later she slowly started to walk again but lost lot of sensitivity in her legs and her skin still react to touch with pain.
Couple of days ago doc come, gave her envelope with test results and told her to wait one more day for another doc to interpret what it all means.
She called me scared and asked to google all this and what it all means and when I started to google I almost lost it.
There were some oligoclonal bands in her cerebro spinal fluid, Antinuclear antibodies ANA, oligoclonal protein IgG Type2*
and something that freaked me out, in her blood test there were aquaporin 4 antibodies.
I searched and searched but from what I could learn those are synonymous with Devic's syndrom.
However, instead of Devic's Syndrom the doctor labeled diagnose under code of G36.8 as Other specified acute disseminated demyelination.
My sister was talking with a doctor and also was worried about NMO, from what we googled mom would need treatment but doc said that until second attack comes there is no treatment apart from rehabilitation and second attack might not come at all, she also didn't called it Devic's syndrom but NMO spectrum diseases (its a rough translation english is not my native but she was ambiguous).
I googled and googled and yet I cant seem to find those aquaporin 4 antibodies in any other disease or context but this horrible NMO thing.
Are those aquaporin 4 antibodies synonymous with Neuromyelitis Optica or there are other cases when they can appear in tests?
If its only NMO thing why no Devic's disorder diagnosis then?
What treatment my mom should receive in case its Devic?
Technically she is in hospital that considered top notch here and specialises in MS and Devic syndrom but getting doctors to talk is very difficult so there is no clear understanding of the situation.
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