Last reply 1 month ago
AQP-4 / NMO Blood Results

Hi folks 👋🏻

Don’t suppose anyone else has had blood tests done for Aquaporin 4/to find out whether they may have NMO?

If so, could you hazard a guess at how long it should take for results to come back?

Thanks ☺️
Hope today has been good!

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mlgilber1
1 month ago

I was tested when I was in the hospital and it took about a month, but I was told it’s not always accurate so my specialist ordered a specialty test and it also took about a month to get the results.


emma_t
1 month ago

Hey, I’m a noob so this is my first post! 🙃 I was just at my neurologist appointment yesterday and I am still not diagnosed yet as they want to test for NMO first and other ‘MS mimics’ (i thought I was done with all the blood tests clearly not!) said to me it would be about 4 weeks and it has to be sent to Oxford (I live in Glasgow). Hopefully yours will roughly be the same, but I thought you had been diagnosed with MS surely they should have done the NMO test before diagnosing? Hope this helps!


mlgilber1
1 month ago

@emma_t I know here in the US they usually don’t test for it unless they suspect it since that one is much more rare and it’s almost identical to MS just bigger lesions. They only tested me after finding a lesion 3 times the size of a typical MS lesion, but still they told me they’re much bigger than that even in NMO.


keepsmyelin99
1 month ago

@mlgilber1 I’ve never been told how long it should take so thanks for letting me know! Hopefully I should hear soon.

Hi @emma_t yeah I’m fairly recently diagnosed (mid August). Then when I went for my first neuro appointment on saturday he said I should get this test done. I’m in West Lothian so not too far from you – I’ll probably get mines sent to Oxford too! But I do recall being sent for mystery blood tests (idk what they were for) the week that I was diagnosed so I think they might have sent me for this test twice. Communication has been sporadic and confusing tbh so I’m just hoping the results are in soon and I can start on a treatment. I’m not enjoying carrying this worry around that I might not actually have RRMS and it might be NMO, because I’d sort of come to terms with my RRMS diagnosis. Now I’m just a bit taken aback and impatient!
Your answers have helped though, as it now gives me a few questions to ask at my next appointment and puts a time limit on my worrying – not that timed worry is better than ongoing worry, but at least I know roughly when it’ll end 😂

Thanks again folks ☺️


emma_t
1 month ago

@mlgilber1 ah right, they never really explained to me why but I did have a lesion a bit bigger on my neck than the few in my brain so maybe that’s flagged up to test it plus there are completely different treatments for NMO so I guess they need to really make sure it is or isn’t it.


emma_t
1 month ago

@keepsmyelin99 West Lothian is not far at all! I think I’ve had duplicate bloods done as well and the communication can be a bit lost but I’m sure they know what they are doing… Must be frustrating for you since you’ve been told and now they are like hang on we need to test for this as it might be something else 🙄. But yeah 4 weeks is nothing and then you can start your road to treatment 🚗 .

No worries glad I could help ☺️


keepsmyelin99
1 month ago

Yeah 🙄 😂 if I have had duplicate bloods done for APQ-4, my first set should come back with results in the next week hopefully – it’s been 4 weeks to the day since those first mystery bloods. Just going to try and stay as calm as possible and get on with things! X

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