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devic's diseaes

Hi all, Has anybody on here ever been tested for devic’s disease and if so how long does it usually take for the results to come back? Thanks

Yes I’ve been tested. The bloods usually sent to Oxford (or somewhere near Liverpool maybe the Walton I think also can do the tests). It usually takes about 6 weeks for the results to come through.

Good luck

Reemz

X

[quote=“Gokr”]

Yes I’ve been tested. The bloods usually sent to Oxford (or somewhere near Liverpool maybe the Walton I think also can do the tests). It usually takes about 6 weeks for the results to come through.

Good luck

Reemz

X

[/quote] Agree. Oxford and a few weeks to wait in my case. Alison x

Can I ask the reasons for why you had to have the test done as mines because of a large lesion which I believe covers 4 segments of my spinal cord if that makes any sense, I do have 2 small spots on brain mri and I’m waiting for next mri appointment but this time they using a dye. Thanks tracy

Hi Tracy

My first brain and spine MRI showed non-specific sub-cortical lesions spine was okay, though from my examination and symptoms (bladder, bowel, leg etc) he felt it was an episode of spinal inflammation. I then developed a second episode which was stabbing pains in my eye and facial pain. I think the neuro played the wild card and thought it could be optic neuritis (it wasn’t - I think it was trigeminal neurlagia), and with my 1st spinal episode he wanted to rule out Devic’s though he was pretty certain, as was I, that it would be negative.

Hope that helps.

Reemz

X

Hi reemz, thanks for answering my questions, it gives me a better understanding now, did you get a diagnosis as to whats causing your symptoms ? ? Tracy

My neuro was terrible - even though he sent me for tests he didn’t help with any of my symptoms and insinuated they were age related at one point (I’m 30) then almost insinuated they were make believe. He was terrible.

I got referred to another general neuro who referred me to another neuro specialising in MS in oct and they said all the other most obvious stuff had been ruled out and even some ofthe absurd as above and that it sounded like I’d had two episodes of symptoms and fitted in with ? MS. I was offered an LP and EVP at the time but declined as with non-specific MRI findings a positive LP/EVP would only give me a probable MS diagnosis and no access to meds that could reduce MS relapses. I’ve actually felt very good from early oct all symptoms were gone until early this year and now I’ve had a flare up of some old symptoms and possibly new.

I have a review with the neuro in april but can contact to go for the LP/EVP if I change my mind. Waiting and seeing - if mys symptoms get worse I may ask to be seen earlier. How did your neuro come to look for Devic’s for you?

Reemz

X

I first saw my neuro in november and he examined me and asked about my symptoms in which I tryed to explain but my mind went blank but mine

started in my back 3 years ago with a pressure type pain and numbness and tingling, it started in the centre of my spine just to the right and after that I would have different symptoms, my neuro looked at my mri of brain from when ent specialist requested one so he went by that and said I had 2 small spots showing up and told me he wanted mri of my spine, I saw him 3 weeks ago and he was quite pleasent with me (last appointment he seemed offish) and asked me how I was then said there was a large lesion showing upper spine and he wants to do one more blood test but wouldent tell me what it was, I asked him about ms and he said in ms the lesions are normally smaller in size and the one I got is very long, he said I have to have another mri but with a dye, and he said that an LP would prob come back inconclusive, not that I’d want one, so I’m waiting for that appointment now and results of nmo test, its the not noing that annoys me, I dont play on it, like I’m told many times by family, I keep the pain to myself now, I say nothing cause you feel like a hypochondriac, my symptoms are real and disabling, but I prod on as best I can , tracy x

Hi everyone my wife has just been diagnosed with Devic’s after an initial diagnosis of MS in January 13. She suffered eye sight problems in July 2012 and by February 13 she was almost bedridden. After a five day stay in hospital at the end of March on IV Steroids she is now home and prescribed azathioprine from last week. Please any advice and information.

Hi Andy, and welcome :slight_smile:

It’s best to start your own thread normally, so that everyone sees your post, but while I know there are a few people with Devic’s who use the site, I’m not sure how much they are on here. My knowledge of Devic’s/NMO is all theoretical, however while I know that treatment for it and MS are different, I think immunosuppressants can work well for both conditions, depending on the person of course. The idea is that the thing causing all the damage is the immune system so keeping it in check should slow down the disease.

I think the best advice I can give you ongoing is to make sure that your wife has a top notch specialist neuro: it can make a big difference.

For now though, take it one day at a time: it’s one hell of a thing to get your heads around, but things tend to get easier with practice.

Karen x

Thank you Karen

My husbands neurologist wants to test him for devics he has lesions on brain has lost central vision in both eyes for over 2 yrs and struggles with colours we are still waiting for appointment for blood tests at hospital.We were told only 2 hospitals that do tests and would take nearly 2 months for results.He is still waiting for the test to be done having mri spine this week and lumber puncture next week.Wish hospital would get a move on with blood test apponitment.xxx julie