Devic's Disease

[panic01]

Is it possible that I may have MS even though my MRi only showed inflammation of the optic nerve and a little bit on my cervical spine? The inflammation on the spine was hard to see, MRi done without contrast though. I'm just very scared of what I've read about Devic's. I have been getting plasmapherisis done every other day. I havn't noticed the L'hermette's sign getting better, I actually believe its gotten worse since I started the plasma exchange. And my vision is getting better, but that could be from the steroids I took.
Basically my question is, can you have MS with no brain lesions?

[Diana19722]

Have you looked at the Guthy Jackson site? Lots of good information. They have now said the nmo Devics can have brain involvement. I hope you are being treated now.I have nmo Devics there are alot of people that are doing well with it also there are people that are having families please don't let this disease take over you. There is alot of new hope for us.

[firerescue9]

Hang in there panic01 until all test results come back.  When I first got the Optic Neuritis my Neuro also was afraid that I had Devic's. I was in limbo for about 2 month before I found out that I do not have Devic's, but I have been diagnosed with MS.  Most of my lesions are in my spine.  So far my brain scans have been clear.  My MRI also showed the swelling of the optic nerve.  Also the swelling was so extreme that when my eye doctor took pictures of my right eye he also could see the inflammation.
Both the eye doctor and the neuro doctor said that was unusual.  There is a specific blood test the doctor can run to confirm or rule out Devic's.  It is expensive and results take awhile to come back.  This is how i found out that I did not have Devic's.  They look for certain things in the test and I did not have any.  Can't not remember at the moment what it was called.

Hope everything goes well and just keep positive.

[Hollywood101]

I know I'm really late in commenting lol but just I'm case I'll go ahead and comment.. In order to have ms you have to have lesions in your brain and/or spine. However, it is possible to have invisible lesions. Which are just like lesions that show up on the majority of people with ms MRI except it's called invisible for a reason.. they can not be detected by a MRI but they are there. Also you mentioned you didn't have contrast. I would get your doctor to order another with contrast using a high intensity machine. If I were you I wouldn't settle for a 1.5 tesla, go for the 3t or 7t. Obviously the higher intensity the more detailed picture and also spinal taps (lumbar puncture) are usually ordered. Keep in mind that you can have a negative spinal tap as well and still possibly have ms but it can help rule out otherthings. All these things play a part in diagnosing someone with ms. I'm going through something very similar so I've done a lot of research. I hope this helps someone and you're doing well.

[StormyRenee]

Hi Panic...

I cant offer any info just wanted to offer some support...I was originally dx'ed with Transverse Myelitis which is in the same family as Devics.  But I also have brain lesions which is not caused by TM....I have had right  eye issues the entire time since this all started for me a year ago.Pain,vision issues but the docs want to say it is caused by migraines...  Evoked potentials show no optic nerve demylenating.....But docs are now thinking MS...I know how you feel it is a confusing mess......

I hope you get some answers.....
Take Care , Theresa

[Quixotic1]

I agree that MS remains a possibility until you are definitely dx'd with NMO (which is the name more docs are using now - NeuroMyelitis Optica.

Yes, MS is still a possibility.

Quix

[doublevision1]

Hi again, thanks for the additional info on your situation.  I am going to PM you on this topic.  I am somewhat familiar with Devic's as in January of this year my neurologist suspected I may it and not RRMS which I was dx'ed with in Nov 2007.  My NMO-IgG test was negative, and I've had no relapses since then; seem to be pretty stable on Copaxone, so I'm still being treated for RRMS though my neuro never did clearly rule out Devic's.  BTW, I am also in Canada; in northern Alberta, and treated at the MS Clinic at U of A in Edmonton.  You definitely do have access to top notch specialists in London, ON, which is a good thing.

In the meantime, here are a few threads on Devic's/NMO which circulated earlier this year; there may be some info in them that you may find helpful.

http://www.medhelp.org/posts/Multiple-Sclerosis/Neuro-threw-me-a-MAJOR-curve-ball-today/show/765594

http://www.medhelp.org/posts/Multiple-Sclerosis/NMO-IgG-test-for-NMO-Devics-disease/show/800255

http://www.medhelp.org/posts/Multiple-Sclerosis/NMO-IgG-test-for-NMO-Devics-disease/show/800255
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[Lulu54]

Panic, please don't panic yet.  Give your doctors time to work through this - you know the odds of you having Devic's are very slight.  You don't want to plot your future or drop your relationship on just a fear that you have Devic's and not MS.    


As my mother always says ----don't borrow trouble.  Please don't be thinking Devic's unless you have been positively dx'd.

be well, Lulu


Sharon, here's the info on the difference between the two that I found ....

http://www.mayoclinic.org/devics-disease/about-devics.html

Differences between Devic's Disease and Multiple Sclerosis

In well-established cases of Devic's disease, it is usually possible to accurately distinguish it from MS. However, early in the course of these two conditions, it may be difficult to definitively separate these two conditions. The distinction is important to ensure the most appropriate treatment.

There are several important differences:

    * Clinically, Devic's disease affects only the optic nerves and spinal cord, whereas MS affects the brain as well.
    * Attacks of Devic's disease tend to be more frequent and severe than attacks of MS, though this is not always the case.
    * An MRI of the brain is typically normal in Devics disease, although this is not always the case; in MS the MRI of the brain typically shows many areas of inflammation.
    * An MRI of the spinal cord shows continuous extensive inflammation of the spinal cord whereas spinal cord inflammation in MS typically occurs in much smaller patches.
    * Spinal fluid in Devic's disease usually lacks the typical elevation of antibodies detected in patients with MS, although occasional patients may show this abnormal pattern of antibodies.
    * The autoantibody NMO-IgG is specific for Devic's disease but is undetected in 30 percent of patients.

[coco31]

this is a great question. Does anyone know how to diffrenciate between the 2? I had L'Hermittes Sign optic neuritis in right eye, follwed by optic neuritis left eye 5 weeks later and 8 weeks later transverse myletitis? However I do have several/many brain lesions consistant with an MS diagnosis but is it possible it could be devics? How do we find out the difference? Are they related?

[panic01]

Sorry I should have given a little more info on my condition. My Neuro-Opthamoligist "thinks"  I may have Devic's. Waiting on blood tests to confirm that have been sent to the MAYO clinic. I live in London Ontario, which has some of the best Doctors and facilities in Canada, yet few have heard of Devic's and I am the first "one" that has been treated here. So to make my nerves worse doctors, residents and nurses come to see me while I'm getting plasma exchange to ask me about my symptoms. I feel like I am the one reminding them that it hasn't been confirmed when I would like the reasurance myself.  So to answer your question I am getting plasmapherisis on basically the hunch that I have Devic's Disease.

I have had a rollercoaster of symptoms, but by the time I saw the Opthamoligist I was completely blind in my left eye and L'Hermittes sign. I feel like a million bucks other than that. I had a course of prednasone 1250 mg a day (took twenty-five 50 mg pills at a time)


I know that plasma exchange doesn't work for everyone, but before I started treatments the L'hermittes Sign was almost gone. I had NO buzzing it was more like just the hair on my thighs was standing up. Now I can feel in the back of my legs buzzing and it is intense. My eyesight has gotten better but that could be from the steroids, since they are suppose to speed up recovery not cure Optic Neuritis.

I am not responding at all to the treatment, and neither would an MS patient hence why they do not do plasma exchange on MS patients (at least not in Canada) anymore.

Im 23 years old, scared to death of what I've read about Devic's. I have already started thinking about NOT having children, selling the car I just bought, breaking up with my boyfriend of 4 years so he doesn't have to deal with what Devic's does to people. Prognosis is grim. I know this sounds silly but I hope that I have MS rather than Devic's, when I thought that I might have MS I didn't think about not having kids or breaking up with my boyfriend. I wasn't terrified or depressed. I didn't endlessly search the internet for story's of good outcomes. I went day by day not letting it control my thoughts.
Devic's Disease is controlling my thoughts.

Sorry for the novel

[doublevision1]

Hi there, sorry to hear what you're going through.  You say you're getting plasmapherisis, have you been diagnosed with a specific condition?  I'm not clear from your post whether or not you have been dx'ed with either Devic's or MS.  
To answer your question, yes you can have MS without brain lesions being identified, either because there aren't any, or as tarter said, they just aren't visible on the scan.  Is it possible to have another MRI, this time with contrast, of your brain, cervical and thoracic spine, to be as thorough as possible?

[tarter]

Hi there I read the health page and I seem to remember that lesions can sometimes be missed and some people have MS with no lesions evedent on scan.
I would read the article there is a section on this question but I am sure some of the others will have anwers for you.

The Lhermettes sign getting worse is a clinical symtom.
Hope you get some more info soon take care tarter