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Cookie668 · 07-05-2012, 12:57 PM

I have not been officially diagnosed with MS yet, although the doctor's appear to be heavily leaning in that direction. My doctor has ordered an NMO antibody test for me. Is this a routine test--kind of like the tests for Lupus and Lymes???

I do have a call into him to find out, but I was wondering if anyone else has had the test as part of the diagnostic process. THANKS

MSJayhawk · 07-05-2012, 01:43 PM

Devic's Disease, now called neuromyelitis optica (NMO), is a syndrome that involves the optic nerve (optic neuritis or ON), and the spinal cord (longitudinally extensive transverse myelitis - or LETM) and may have additional brain lesions as well. In order to separate NMO from MS the anti-body blood test is used. Generally MS has discrete lesions and the NMO has lesions that extend longitudinally down the spinal cord.

I hope this helps you.

Just to add, I do not think this is a special test but a routine test. Because a specific antibody exists with NMO, it can either be the diagnosis or it can be excluded. There are many blood borne causes which are also tested as possible causes, again- routine.

Cookie668 · 07-05-2012, 02:23 PM

Thank you MS Jayhawk- I had read that somewhere else (of course, now i can't find it); the part about the lesions. I pulled out my MRI's and my husband and I were just looking at them and the single lesion does look like it goes longitudinally down the spinal cord (but what do I know?), so that's probably why he ordered it.

Do you happen to know if this test still needs to be sent to the Mayo clinic in order to be conducted? Someone, somewhere mentioned that the test cost her $700 (but that was in 2009, I think) and had to be sent to the Mayo clinic. I'm not so much worried about my out of pocket cost because I am blessed with fantastic insurance, but I didn't want to believe that my doctor was ordering a super expensive test for no reason.

On a separate note, i'm a little freaked out to think that i could have Devic's....(OK, a lot freaked out) -I don't think the doctor didn't mention that he suspected it - but then agin, I was so nervous when he called, he could have said anything. I had already been through a round of blood work to rule out Lupus, Lymes, and others and my ANA came out positive. I visited a rheumatologist who ordered more blood work, and was able to rule out Lupus. So I get a call from the Neuro late Friday evening and he's telling me that he wants me to get more blood work (and I'm thinking geesh, why didn't he order this test the first time?!?). He faxed me the paperwork and I just got around to looking at it this afternoon...and so I googled it....... YIKES!!!!!!

He also wants me to go see the MS Specialist and I was lucky enough to get an appointment within three weeks. Is it just me, or are these doctors speaking another language? I think this time I'm gonna drag my husband or sister in just to translate for this next appointment.

I feel like i'm in a bad dream with this process -On Jan 2, 2012 I am totally normal (we went to a bowl game that night!) and the next day I woke up with no feeling in my left pinky and ring finger and more numbness/tingling in different parts of my body from there.

Thanks for letting me vent!

MSJayhawk · 07-05-2012, 02:34 PM

It could be that your doctor is contracted with the Mayo clinic for testing. I know that the Cleveland Clinic also does NMO antibody testing.

I would assume that if it is negative for NMO then it is probably MS or pointing in that direction.

Limbo land can be very frustrating, but it would appear that you are on the right path. It appears that you have not been seeing an MS Specialist yet, but if the report is negative, you will be. Thus, you are doing well- all things considered. It takes the patience of Job to get through the process.

Please feel free to vent here. You need not feel alone in this and it looks like you have a good familial support team in place.

Please note that the process of arriving at "MS" as the diagnosis is not easy. Along with NMO, Lupus, Lyme.....the total number of possibilities is about 400. Your doctors have to test for specific possibilities in order to eliminate them from your case. When everything is eliminated, then the doctor can say "MS" with certainty. Stay strong!

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