4 months ago
Devics (NMO)

My hospital doctor wants me tested for devics (or NMO as it’s now known).

http://www.devic.org.uk/

It’s very similar to MS though can be much worse.

This is quite shocking news to me and although I’ve yet to be tested it’s put a different perspective on things.

I’m really hoping I don’t have this and would rather it was MS.
The following is a quote from the devics site page:-

“Unfortunately, the attacks eventually lead to permanent blindness or/and paralysis in most cases of relapsing form of the condition. Over time, the condition can also lead to breathing problems and make the patient dependent on artificial ventilation.”

Just curious as to if anybody else has come across this or been referred for the test.

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Blimey.

Dark.

I’d never heard of this condition….

It is shocking… and i hope that It’s not… however It’s good that the clinicians are on point and checking out all possible angles…

keep us posted on how it all works out and how you get on with things…

All the best.

So, you’ve been previously diagnosed with MS. What tests did the Neuros perform to come to this diagnosis?
I’m just wondering whether you had a lumbar puncture, as NMO seems to be diagnosed in a similar way to MS, apart from blood tests and testing cerebrospinal fluids (CSF).
I’ve never heard of Devic’s or NMO, but I did find this little snippet:- http://www.ncbi.nlm.nih.gov/pubmed/14760945
If MS is notoriously difficult to diagnose, then NMO must be even more complicated!
I’ve always suggested that a diagnosis of MS is a case of eliminate the probables and then you’re left with the possibles. Perhaps, this is discounting another possible……

Keep strong, I’ve got everything crossed that it’ll all be OK. xxx Kay

Keeping fingers crossed for you xxx

love and kisses and cyber hugs coming your way… am speechless xx

There is a blood test they do to look for particular antibodies which indicate nmo. Dont worry they have lots they can do for nmo. If you are in the uk, Liverpool and Oxford JR are particular specailists. look at http://www.guthyjacksonfoundation.org/ and Oxford and JR have there own websites and Guthy jackson foundation is also on Facebook. They thought I had this for a while, but it turned out to have MS. Good you are being looked at because the treatments can be different to MS. I think it is more unusual now days to get as far your quote describes as they do have drugs to slow down the relapses. Look at these sites I am sure your mind will be at rest a bit. The Guthy Jackson foundation is an inspiration.

Along with blood test, MRI of spinal cord is supposed to show very large lesions for NMO, distinct from typical lesions from MS. Most neurologists that I have talked with were not very familiar w/ NMO. Try to see someone with experience and knowledge. Good luck.

Thanks for the advice all.

Stumbler i did have a lumbar initially and have been diagnosed as MS so the devics test is just to rule that out I guess.

It’ll be a while waiting but i’ll let people know how I get on.

This is really sad, because all tests should have been carried out before you were dxd and anything else said to you. I know I was told that my symptoms could be down to any one of seventeen conditions. It does make you wonder at the competency of your team. Anyway, as we’ve all said, lots of hugs across cyberspace. xx

Just an update.

I had the test recently, now just gotta wait for the results.

The out patients wait didn’t take too long as they had a specific section for blood tests.

What’s the timescale for the results. @f3ng5hu1?

Timescale is ermm hospital time, ie they say about two weeks but give it a month or so.

I’ll chase it up if i haven’t heard by then.

@f3ng5hu1, given the circumstances, I would have expected them to move the blood test through the system with blue flashing lights.
Don’t let them string you along. This is important to you.

Agreed, just hope it comes back negative.

@f3ng5hu1, you need an answer and they should bend over backwards to give you one. Keep chasing them, they owe you a quick answer.

I have had the NMO blood test , mine went to Oxford I was told it was. 6 weeks for results, but mine was 8 weeks, it was negative. My Gp had never heard of it.

Yeh, from what have researched it’s not a very well known field of medicine but there are some who specialize in it.

My MS nurse tells me it’s another form of MS which makes it kinda strange that not so many people know about it.

Anyways, I’m really hoping it comes back negative after reading about what it can do and the effects of it.

Will post up on a separate thread when I have my results back.

Keeping my fingers crossed for you! The waiting and not knowing is so hard. I realky hope it is not nmo however if it is you are better of knowing and getting treated accordingly.You seem to be in the hands of knowledgeable people and it’s a good thing they wanna have all the options double checked! X

Hi

Iv got to have a blood test for this to Next week

They was supposed to have done it in June but never did and it’s took my consultant three months to realise this!

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