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Just got back from hospital with hubby told him he wants to test him for devics syndrome

Well we went worrying about ppms neurologist said alarm bells were ringing and wants to test for devics syndrome i read it is a rare and special type of multiple sclerosis.Some doctors ague saying they disagree i dont know what to think i am even more worried now i sat down and cryed.I read its fatal in many patients as causes breathing problems.Neurologist thinks this because of brain scan and loss of central vision in both his eyes and all his other problems he needs to check this out. I think i need a drink lol xx julie

Hi Julie,

Please don’t worry too much hun. Yes, it is a nasty disease but as you say, it is fairly rare and I think some neuros test for it routinely when they suspect MS (I know mine does).

Mags xx

[quote=“Auntiemogs”]

Hi Julie,

Please don’t worry too much hun. Yes, it is a nasty disease but as you say, it is fairly rare and I think some neuros test for it routinely when they suspect MS (I know mine does).

Mags xx

[/quote] Thanks mags your the secound person to say they were tested for it.I think he was concerned as he has lost central vision in both eyes and colours are getting hard to tell like blue and green he strugles with and red.The neurologist said mri brain scan looked like ms but some symptoms rang alarm bells for him.Hopefully he tests everyone just to cover himself.xxx julie

Hi Julie

I was also tested for Devic’s. As Mags said a lot of neuro’s are now more aware of Devic’s because some patients had been wrongly diagnosed as having MS. Devic’s tends to predominantly affect spinal cord and optic nerves where as MS affects more the brain, of course there is a grey area in the middle. Please don’t worry yourself - it shows you have a good neuro ready to think of all possibilities.

Reemz

X

Thanks reemz the more people i hear tested for devics puts me at ease abit as think they are just testing to make sure 100% right of dx. xx julie

Sorry I couldn’t reply properly last night Julie - I was a bit brain dead!

Devic’s, which is also known as Neuromyelitis Optica (NMO), typically presents with few if any brain lesions, and it sounds like your husband’s MRI doesn’t fit with that, so the test is probably more of a precaution than anything, as the others have said.

Although some people still think of NMO as a type of MS, it’s actually a completely different condition. So it’s important to know when it’s NMO and not MS because they respond to different treatments.

There are other conditions that affect the eyes and nervous system too, e.g. some genetic conditions. So your husband’s neuro may be interested in getting those checked too, if he is less confident that it is MS.

However, chances are that it is MS, just with some unusual stuff going on.

I hope it all gets sorted soon. It’s definitely best to know what you’re dealing with than have doubts hanging over it all :frowning:

Karen x

THANKS KAREN THE NEUROLOGIST SAID HIS MRI SCAN LOOKED LIKE MS BUT SYMPTOMS WERE SENDING OUT ALARM BELLS .XX JULIE

Hi Julie, did you once say that your hubby had night sweats? If so did he mention them to the neuro? Do you actually know exactly how they test for devics disease? I am in limbo and as a result ma always interested in things that mimic MS.

Thanks

Moyna x

Hi moyna yes husband has really bad night sweats so bad goes through 3 pillows & vision loss central both eyes, colourvision struggles with red blue and green ,double vision on and off all time, tremors right side sometimes left hand too, stomach pains really bad, weight loss down to 9 stone looks ill very frail ,incontinance, leg problems ,tierdness, speach problem, confusion, moodswings ,headaches these are here all time.Also an mri that shows abnormal results and white patchs on brain that look like ms as both neurologist agree.The thing that they disagree with are the symptoms.It all seemed to start in a short space of time 2 years ago for vision problem & weight loss /stomach problems they appeared first some of other symptoms started around same time mri was done.But no symptom has completely gone just seems to get more.Because both eyes are affected and his colour vision is going and has bladder problems these are symptoms of devics syndrome.Neurologist said he wanted to see him in a month time ,but because the tests he has got to have done are going round the country ,results may take 2 months to get back.When making the appointment said couldnt do it for in 2 months time so its going to be 3 months.This takes it to july its the not knowing, at least if you know what it is you can get head round things.xxx julie

[quote=“Moyna”]

Hi Julie, did you once say that your hubby had night sweats? If so did he mention them to the neuro? Do you actually know exactly how they test for devics disease? I am in limbo and as a result ma always interested in things that mimic MS.

Thanks

Moyna x [/quote] Hi moyna neurologist said he wanted blood work done lots of it mri of spine and lumber puncture done(not nice) i remember by daughter having this done at 4 days old as i was a carrier of group b step after she was born developed shaking even though i had the antibiotics wile in labour.Luckly she was given the all clear i remember how worried i was and i started to blame myself. xx julie

Hmmmm, wondering if I should get tested for this also.

I have 2 lesions on my spine and have had 2 bouts of ON in 6 months. I have one tiny lesion on my brain which the radiographer missed after the initial MRI but the neuro spotted.

Devics was never even mentioned. My symptoms are either because of the exising lesions or are optic neuritis. I have no other symptoms. I do go into remission and then relapse so maybe it’s not Devics disease.

I haven’t another neuro appointment until July so maybe I’ll mention it then.

Yes i would mention it like you say any eye problems best to ask neurologist .Devics syndrome is very rare out of approx 1 million people only 5 people will develop it.xxx julie

I was tested for Devics last year after fifteen years of symptoms as my eyes and spinal cord are affected. Devics does tend to cause problems in both eyes. You can have lesions on the brain but it tends to show longer lesions in the spinal cord.

The test for Devics is a simple blood test looking for antibody NMO IgG. It did take a while to get my results back.

Relapses in Devics tend to be more severe than MS and leave more disability behind. You don’t get an ongoing stepwise progression. Spasms are often a main symptom in Devics.

Neuromyelitis Optica is used more than Devics. Some people can have a few mild attacks at first and then not have any more.

Jacqui xx

Hello Jacqui! It is SO nice to see you on here again :slight_smile:

Kxx

Hi everone thanks for all the input and support i think there are some really nice people on here and have alot of intresting knowledge that is very usefull.My husband does have central vision loss in both eyes and struggles with colour blue and green and red central vision in both eyes seemed to go straight away very sudden.Has lost vision for approx 2 years in both eyes other symptoms started later.xx julie

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