DEVICS

[MrsJohnson]

My neuro of 23 yrs suspected Devics in 2007 and did a nmo marker test. It was negative at that time I had an MRI come back.With 2 lesions that were non enhancing that read something like.
not typical but can be seen with ms. I had a SERS test that Showed somthing kind of transvere myelitis.

Major flair from March 08to Jan 10
(did not seem real convincing for ms) Neuro at the time.. LOST THESE SET OF MRI'S......NEVER TOOK THE TIME THE FIND THEM..

FAST FORWARD.. I AM DOING OK.. LEAVE THIS DR.. ( We had a run in.. I change dr's) wish I had not.
about 2 yrs later I am seeing his partner.
Nightmare dr.The pain specialist.
My MRI's have 5 lesions.. non enhancing. Do not appear to be from MS.. no evidence of a demylinating disorder.
spine was good no lesions in 2010. I have not had another one since then
My question is Can it be possible to know if this is devics ?

What things can I look for to tell the difference?

[Westgrl]

Have they tried testing you again? According to the Cleveland Clinic, 70% of people with Devic's test positive with the blood test. However, they said the brain is rarely affected, usually just the spine & eye.

My doctor tested me when he was diagnosing me. I also came back negative.

I also read that it's hard to diagnose because it's similar to other diseases like:

MS (multiple sclerosis),
ADEM (acute demyelinating encephalomyelitis),
SLE (systemic lupus erythematosis), also known as Sjogren's syndrome,
MCTD (mixed connective tissue disorder),
Some inflammations caused by viruses,
Paraneoplastic optic neuropathy (inflammation linked to cancer).

[MrsJohnson]

THANK YOU SO MUCH, this is some of the best info I have ever been handed. I don't know if it means anything or not.

I am sure that MS fits, but the ADEM is something I was looking at as it occurs after a vaccination.

I really appreciate this.
I know better than to bring up a disease I will let him know about the vaccine.

[Redwings]

Hi MrsJohnson:
The name Devic’s Disease is obsolete. The condition is now referred to by its descriptive term, neuromyelitis optica (NMO), which fits into a broader spectrum of the disease called (not surprisingly) the NMO spectrum disorders.

The best way to learn about NMO is to, yourself, consult reputable medical sources. The most comprehensive source of information about NMO on the Internet is the site of the Guthy-Jackson Charitable Foundation: http://www.guthyjacksonfoundation.org/. There you can find a description of the similarities and differences between MS and NMO.

NMO is often misdiagnosed as MS because NMO is a demyelinating disease and has many of the same effects as MS, except generally worse. If your radiology report said “no evidence of a demyelinating disorder,” that would, if correct, at the moment knock NMO way down or off the list of differential diagnoses. It’s more complicated than that, however, and requires much more information than you've supplied.

The NMO antibody test has a false negative rate of about 30%, so a negative test doesn’t rule out NMO. In fact, some people with classic, unmistakable NMO never test positive. I have NMO and I’ve never tested positive. In the case of a negative test, the diagnosis is made based on what the condition acts like. Some of the information you’ve given us is unclear. In spite of that, you didn’t say anything that’s immediately suspicious of NMO. There has to be more information available to have more to compare to NMO.

The hallmarks of NMO are transverse myelitis and optic neuritis (often bilateral). The only thing you mentioned that might correspond with that is transverse myelitis. What’s unclear about what you said is that an SERS test showed some kind of transvere myelitis. An SERS test detects pathogens; it isn’t a test for myelitis, and can’t specify “transverse” myelitis. Next, while a pathogen can be the environmental trigger for NMO, NMO isn’t itself a pathogenic condition, so the detection of a pathogen isn’t immediately or definitively indicative of NMO. Pathogens can also be the trigger for MS and other neuroinflammatory conditions, the detection of a pathogen isn't necessarily diagnostic.

Another thing that isn’t clear is that you had “a major flair (sic)” but it “did not seem real convincing for ms.” Not convincing in what way, and not convincing for MS as opposed to what? The specifics of the flare are necessary for comparison to other conditions.

Although brain lesions can occur in NMO, they aren’t common, and it isn’t suggestive of NMO for them to occur without optic neuritis, without one or more brainstem lesions, or without transverse myelitis consisting of one or more large, longitudinally extensive lesions. And again, NMO is a demyelinating disease, so it isn’t consistent with NMO for a radiology report to say “no evidence of a demyelinating disorder.”

Although you think that what the other poster supplied is “some of the best info I have ever been handed,” it is, frankly, not very good at all. I can’t imagine what kind of source was consulted to have spawned such misinformation, but what was posted is minimal and contains obvious errors. First, lupus isn’t “also known as Sjogren’s syndrome.” Lupus and Sjogrens are two separate conditions. And NMO, a disease of the central nervous system, is definitely NOT similar to mixed connective tissue disorder, and only a completely unqualified person could possibly confuse one for the other.

It is true that NMO can be hard to diagnose because of similarity with other neuroinflammatory conditions. But all that recognition does is prompt a list of other neuroinflammatory conditions. What’s required is a complete workup to go through the list of differentials, of which there are many.

ADEM is one of the conditions that can act like NMO and MS. So in addition to learning about NMO at the Guthy-Jackson site, you can also learn about ADEM from reputable sources and compare your experiences to its characteristics. Some good resources are http://www.ninds.nih.gov/disorders/a...lomyelitis.htm, http://myelitis.org/wp/symptoms-cond...phalomyelitis/, and http://www.adem.org/.

While ADEM is often is believed to be triggered by a response to an infection or vaccination, NMO and MS have also been known to develop after an infection or vaccination. So occurrence after vaccination also isn't diagnostic of a particular condition. The circumstances of onset can be a clue, but a complete workup still has to be done to identify a disease.

Caution: Not proofread before posting.