Sunday, December 11, 2011

Devic's Disease and It's Relation to Multiple Sclerosis

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how simalar is Devics disease compaired to MS? I know the treatment is somewhat different. My sister has been dx maybe 2 years.
Gender
Male
How old are you? *
41
How long has this been going on? *
More than a year
Check all symptoms you are currently experiencing
  • Eye
Describe associated symptoms not listed above
the only symptom she is having now is reoccuring optic neuritis.
What have you done so far to remedy this condition? Please include tests and relevant studies here.
Results of blood tests and Xrays can go here. Results of consultations with specialists as well.
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difference in the two diseases and life expectancy.





5 comments:

DOC1 said...

Ah, Devic's disease. I know about it only because I had a good friend with it. It was quite devastating to him but he recovered and worked hard and from my personal (not researched) recollection of HIS case in particular, once his disease stabilized it was, unlike with some forms of MS, thought to be 'finished' in terms of it's potential to further damage his nervous system.

A good link to start may be found here at the Mayo Clinic...

http://www.mayoclinic.com/health/demyelinating-disease/AN00564

I will have more for you shortly.

Best

DOC1 said...

And it's a good thing I actually do my research.... As it turns out Devic's disease it very similar to MS in many way, most particularly in that it is unclear when it is first diagnosed if it will take a relapsing and remitting course or whether it will be progressive.

to quote from medicine.net...

"What is the prognosis for neuromyelitis optica?

Most individuals with neuromyelitis optica have an unpredictable, relapsing course of disease with attacks occurring months or years apart. Disability is cumulative, the result of each attack damaging new areas of myelin. Some individuals are severely affected by neuromyelitis optica and can lose vision in both eyes and the use of their arms and legs. Most individuals experience a moderate degree of permanent limb weakness from myelitis. Muscle weakness can cause breathing difficulties and may require the use of artificial ventilation. The death of an individual with neuromyelitis optica is most often caused by respiratory complications from myelitis attacks. "

So, to be honest, if your sister has been diagnosed for two years and is in an established neurologic practice it would be foolish of me to guess as to prognosis apart from this....

If her disease has been stabel, that's good. If she has had recurrences and setbacks, that's not so good.

The devil in this disease as it is in MS is that the prognosis is not known almost until it is known. That's not me being cute, it's me being honest.

A good link on Devic's disease can be found follwing....

Thanks for your question!

http://goo.gl/iuRV7

Billy Harris said...

She was being treated for a couple years for MS only to find out that later that she indeed had Devics. She had major damage to both optic nerves by the time the Mayo clinic dx her with Devics one eye is almost 100% gone and the other eye she has about 30% vision left. She now goes to the MS clinic at Vanderbilt in Nashville, TN, they now have her I guess in some kind of remission by way of keeping her cd-19 levels very low.

DOC1 said...

Yes, in fact, Devic's is often first diagnosed as MS. The treatments are similar. And, of course, since it is rare, there are very few "experts'' with Devics, but it sounds like she is in good hands now. As you know it is characterized by optic neuritis and transverse myelitis, but, even with this known, each patient can have varying involvement of the eyes and musculature. In fact, my friend who developed Devic's had almost no ocular involvement.
 
This link (http://www.webmd.com/multiple-sclerosis/guide/devics-syndrome) is probably the best one I have found so far. And the following quotes are instructive....
 
"Devic's syndrome is a rare autoimmune central nervous system disorder characterized by transverse myelitis (in which the fatty, protective covering of the spinal cord breaks down) and optic neuritis (in which inflammation of the optic nerve causes loss of vision and eye pain).]. It is considered a special form of multiple sclerosis (MS) with a severe and rapid course. The disorder affects the optic nerve and the nerves in the spinal cord. In Devic's syndrome, the fatty sheath that protects these nerves is lost. Individuals may experience vision impairment and various degrees of paralysis, as well as incontinence. The disorder is closely linked with MS and lupus, but usually appears before any symptoms of MS are noted. If an isolated disease episode affecting the spinal cord and optic nerve occurs after an infection or common cold, it is considered a post-infectious acute demyelinated encephalomyelitis (ADE) rather than Devic's syndrome."
 
And, thanks to your question, I have also learned that in the case of my friend he had an atypical form of Devics in that it was post infectious, and, probably because of this his course was acute, but also became stable over the course of a few months.
 
Then there's this, which is troubling to say the least, "
"What is the prognosis?

Devic's syndrome is fatal in many patients. Some ADE patients achieve complete or nearly complete recovery while others may have residual deficits. Some severe cases of ADE may be fatal."

So to the extent that her disease has stabilized we can take some comfort, but, as you can see, we simply do not understand either MS or Devic's disease well enough to be very certain about treatment or the likely response to it. Let me see if I can get my colleagues to add whatever they can on this one. Thanks again for your question.

Billy Harris said...

you welcome and I do thank you guys for all the input..