02-17-2017, 10:35 AM #1
- Join Date
- Feb 2017
Are aquaporin 4 antibodies appear in any other context than Devic's syndrom?
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.
02-17-2017, 10:33 PM #2Registered Member
- Join Date
- Apr 2015
Unfortunately, MSWorld calls out NMO for discussion. NMO is so specialized and different from MS that it should never be discussed in an MS forum. People with no real knowledge of NMO get into discussions based on information that is usually completely wrong, and it ends up misleading everyone and being a disservice to everyone.
There is a charitable foundation for NMO that has the best and latest information. So after this thread, please go only to the Guthy-Jackson Charitable Foundation at https://guthyjacksonfoundation.org/. The foundation also has a Facebook page at https://www.facebook.com/guthyjacksonfoundation.
I do have knowledge about NMO, so I'll address some of your questions until you can get to the Guthy-Jackson website.
Second, NMO/NMOSD doesn't have its own diagnosis code. G36.8 is the closest code that exists, so the doctor used the correct diagnosis code. (Sometimes G36.0 is used.)
I hope you and your mother can get the information you need from the Guthy-Jackson Foundation website and that she can get into the care of an excellent NMO specialist. I wish you and your mother all the best.
02-18-2017, 12:07 AM #3
- Join Date
- Feb 2017
In fact govt doesn't fund newest medications and therapies, that was something I read as well.
My mom currently lying in rehabilitation ward, she's been there for couple of weeks already.
They dont even have contact with neurology ward to which she was admitted initially and she does not receive any treatments at the moment, just gym.
In addition, from what I understood doctors leave on saturdays and sundays so should things go wrong I cant say whether she receives a proper treatment.
I told her if she feels something off to inform doctor immediately because those attacks can go very fast and stressed out to contact her doctor on neurology (same building) but she says that when she wanted to talk to that doctor and asked someone to pass the message she was given the reply that its different ward and they dont contact in between (its same freaking building).
I said they specialise in NMO only because on Polish forum dedicated to NMO, people said this hospital cooperates with foreign health foundations and people working there are professionals who knows what they do, supposedly its the best thing they have here.
Too bad since my mom got transferred to rehab no one from neurology came to check on her apart from handling her envelope with test results.
My mom got paper with which she should go to some MS specialist she chooses after she leaves rehab but when that be its unknown, best case scenario couple of weeks.
They even have MS specialist in this hospital but apparently there is no place for her so she should search by herself as far as I understood.
My sister who lives next to the hospital and visit mom daily and spoke with her doctor, has breakdowns when I tell her its NMO and mom should receive treatment and she need to talk to doctor about it.
She just cries and tell to pray there wont be a second attack and aparently convinced that NMO should be G36.0 so G36.8 is something else.
I have doubts whether dumping the whole truth on her will help, she probably can guess herself already.
I wanted to talk to doctor by phone but my sister warned that they dont give out info by phone so I dont know whether I manage to get answers.
Mom also apparently didnt get the whole story from doctor because she is pretty calm about it, I don't think she understand what the diagnosis really mean.
She just says she hopes it wont return like the doctor said and I cant really bring myself up to tell her how serious this thing is right now.
Just stress out that should she feel something off, eye pain or something to insist to contact neurology, but how that work out should things go south I dont know.
At the moment I am the only one looking at things trying to see for what they are and I have no power to do anything.
Doctors know better apparently and in Poland NMO is not really researched or treated as well as in better developed countries or at least thats the impression I am getting from everything I read in the past few days.
For treatment options we also should wait till she is released from rehab and finds MS specialist to consult.
It pains me to think what future awaits her, she was extremely lively woman, she did tons for me, did her best to help me for decades and I cant do anything now when this is the only time she need help.
We are not wealthy, even if I find job I would have to work 4 months to get one dose of rituximab which apparently used in treating this thing better than other meds, and thats if I dont spend the money at all and find specialist who will use it.
I thought that treatment overboard would be an answer but financially its not possible, I dont see many options to fund it.
People in Poland live with NMO but I want her to actually get help, not just live with whatever she is handed.
I visit the links you posted probably tomorrow I need to maintain some day/night cycle, I cant sleep and if I dont force myself, I cant think straight during the day.
Thank you for your help, if you can, look at this thread once in a while, I might need some more answers and you've been pretty helpful and from the looks of it know much more than me about this thing.
Also, 10 days prior to when she felt first tingling on her leg which she thinks developed into this, she fell and hit her side on the table.
Few hours later she did roentgen and nothing was fractured or damaged but she complained about her spine aching for some time.
All doctors she spoke to denied possibility this was the cause, they said if it was the cause it would be 24h later, not 10 days later.
Could it actually be the cause?
Sorry for wall of text, I am going to try and get some sleep now.
02-18-2017, 12:38 AM #4
- Join Date
- Feb 2017
Forget to ask and there is no edit button, better for clarity anyway.
You said that sometimes second attack never happens.
I read that this happens only when spine and optic nerve get attacked simultaneously.
In my mom's case as of yesterday only spine was attacked from what I know (No eye pain)
Also she has those aquaporin 4 antibodies, I read that this is the case where attacks repeat.
Since antibodies are harder to unlearn not to attack.
Is it still possible the second attack wont come despite all that?
I would really liked to luck out on second attack wont coming at all.
I just wish she could die of old age happy somewhere, not this ...
02-18-2017, 02:06 AM #5Registered Member
- Join Date
- Apr 2015
Even though the hospital your mother was in is supposed to specialize in MS and NMO, their beliefs about NMO are not up to date, and neither is the Polish NMO website you were reading.
Rituximab may be the most commonly used medication for NMO, but there are other medicines your mother can take if you can't afford rituximab. Another medicine used for NMO is azathioprine, a powerful immunosuppressant. It's been used for decades and is very well understood, at least in the United States. That may be different in Poland. But it at least gives your mother a treatment option that's more affordable.
And she can always be treated with high-dose steroids again if she has another attack. But the next time, the treatment should start immediately, not after several days.
Hopefully your mother will get more information when she sees an MS specialist in a few weeks.