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NMO-IgG test
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NMO-IgG test

In reference to my previous post about neuromyelitis/NMO/Devic's disease, I have a question for all of you who have undergone labwork for MS and/or its mimics.  

If you happen to have your old lab reports, can you tell me if you've ever been tested for NMO-IgG?  If so, what was the result (+ or -) and was a numerical value and unit of measurement assigned to it?  Also, on your report, was a reference range include, and if so, what was it?

Thanks for any info you may be able to share.
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739070_tn?1338607002
Hi doublevision1:
http://www*mayomedicallaboratories*com/test-catalog/Clinical+and+Interpretive/83185
Results of the testing as shown on the mayo clinic site. States reference is negative meaing negative is normal. Sorry if this is bad news but use any and all information to your advantage. If you need specifics researched please let me know and I would be happy to help in any way I could.

Rendean
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572651_tn?1333939396
Hi DV,
You know so much, this may be simple to you, but in case its not, here's an explanation of the antibody test but I find no NMO lgG.  They do say that there is no normal reference range for antibodys because everyone's different.  Here's their explanation:  http://labtestsonline.org/understanding/analytes/antibody_tests/glance-3.html

I'll double check my labs and see if I have anything listed there but this isn't ringing a bell.

Laura
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572651_tn?1333939396
I have my labs from my MS diagnosis elimination round of lots of tests- here's the list of the Serology tests that were run - all of which were negative for me.

Anti-dsDNA Antibody
Smith Antibody
RNP Antibody
SS-A Antibody
SS-B Antibody
HTL-1/HTLV-2 Antibody
ANA
RPR

Now just don't ask me what most of those mean because I haven't a clue!  These were the only grouping of tests that didn't have a reference range with them - everything else has values assigned.

L
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382218_tn?1341185087
Both of those sites are great references.
It would seem from what I have gathered thus far, than any value assigned to NMO-IgG is a positive test.  Though apparently in addition to a positive blood test (if in fact, mine is), there have been other criteria put forth in order to confirm a dx of NMO (ie: spinal lesions that cross 3 vertebrae? or something like that).  So perhaps there's more to it than just the blood test.  Just wish I had known this was being considered before I went for my last appt, as I could have had all these good questions prepared.  

Lulu, thanks for digging out your report.  I wonder if any of those tests have anything to do with NMO; they don't appear to, but like you I don't know what most of them are.  Geez, since a MS diagnosis is one of exclusion, and if NMO, while rare, is even a slight possible alternative, shouldn't it be a standard test so it is ruled out up front?  I just read an abstract that said NMO is frequently misdiagnosed as MS.  No wonder!!
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572651_tn?1333939396
This site has a little bit more on it but has a spot where you can write a question to this neuro.  You might give it a try  and see if you get a reply...........
www.bellaireneurology.com/multiple_sclerosis/ms_neuro_optica.html
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719912_tn?1234394365

Hi doublevision1,

My NMO results said Neg with no numbers after that.  Below is a website where you can find people with NMO / Devic's they should be able to answer your questions.


http://

groups.google.com/group/Devics-support/topics

JJFL....
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739070_tn?1338607002
Most of not all of the tests listed by Lulu are to rule out rheumatolocial disease/ autoimmune such as Sjogren's or Lupus, especially the Anti-dsDNA Antibody &
SS-A Antibody,SS-B Antibody,  and ANA ; know these well as have them repeated more than once.  RPR is also some sort of Immunology test.

Rendean
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486038_tn?1300066967
doublevision, all the resources I have on Devic's say the reference for the test is Negative. However, labs are unique, remember labs are not monitored by the FDA so they don't have to have the same range or anything.

So, just hang in there till you know what YOUR labs mean. :) Try talking to your doctor or calling your lab back, and try not to worry about this ok???? Just put it on hold in your mind until someone can give you a "yes" or a "no" answer.

~sunnytoday~
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382218_tn?1341185087
JJFL: I checked that blog you mentioned and it has a link to the CMSC site, with a very informative 30 min slide show and audio presentation of a neurologist from Mayo giving an in-depth talk on NMO and the antibody test used for diagnosis.  Thanks for pointing me in that direction.  If anyone is interested, it's:

www.
mscare.org/cmsc/images/slides/2008cmsc_symposium3_wingerchuk/web/default.
htm

Lulu, I tried sending a question to that site but got an error message.  Will try again today.  In the meantime, my friend has a relative who works in a lab, and is checking with her to see if she can provide some context for the NMO test.  If I learn anything further I'll be sure to post about it.

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You're right, the way results are expressed seems to vary so much from lab to lab, and perhaps much more so from country to country.  I'm just kind of holding my breath and trying to stay busy in the meantime!
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haha, forgot you were in Canada.... who knows that regulations you have on labs up there.
~Sunnytoday~
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333672_tn?1273796389
Well, I put on the other thread that mine was negative and the reference range was given as negative. As far as I can tell, that's the way the NMO test is reported. So I don't know what to make of the number that the lab gave you.

You could get a number in that for antibody titers they sometimes give a ratio of the highest amount of dilution that gets a positive result before they get a negative result, but so far as I can make out, they don't know if the amount of antibodies has any meaning in the context of Devic's disease.

I hope you can get this cleared up soon.

sho

PS That nurse was way off base in suggesting that a negative result didn't need follow-up, especially for something major. Sometimes results get lost or go otherwise awry. See http://distractible.org/2008/08/11/getting-along-part-2-patient-rules/ rule #6 No news might be bad news.
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Avatar_f_tn
I have been doing some research on Devic's too. I dont have a dx yet, but searching for all different kinds of dieases to help aid in me getting a dx. I found this website and hope it may be of some help to you and others especially my friend Tania who does have a dx on Devic's.

http://www.devic.org.uk/gayle.php

The videos are long but very informative.
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649926_tn?1297661380
  Hi! Your timing on this topic is excellent for me. I just had 24 vials of blood taken this week and have been looking up the tests for what they are used for. One test is the NMO IgG serum. I knew that the doctor's were looking for Lupus etc. to go with my MS but now I think they are thinking possible Devic's instead of MS.
  I don't have all of the results back because the big ones take 2 weeks but I will keep you posted on the result and what the doctor says on March 9th.
  If you have any questions, I can ask her for you when I see her.

  Hang in there
  Erin :)
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649926_tn?1297661380
Laura,

  Hi! I can answer a couple of your blood tests because I just had them

  SSA Antibody & SSB Antibody are for Sjogren's Syndrome
  ANA is for Lupus

Amazing that I had 24 vials of blood taken and only 3 were from your short list. I would love to know how many tests they could run if they circled everything on the lab sheet, lol.

Erin :)
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739070_tn?1338607002
I was researching for work and came across this site. Not sure if its been mentioned before www*cambridge-medical*com.  It has a MS Journal that contains an article pertaining to markers for NMO other than the IgG test. Thought it might help...

Rendean
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382218_tn?1341185087
Thanks!  That site does have a lot of good info.  I've printed off the stuff on NMO and will go through it tonight.  Some of it is pretty technical but the key points seem clear enough even for a laywoman like me.

I see my GP tomorrow, and noticed she was cc'ed on the lab requisition for the NMO-IgG test, so it will be interesting to find out whether she has the results and if she can interpret for me.  If not, I'll be asking her to call my neuro on my behalf.  I imagine he is more likely to take a call from another physician than from a patient.  In the meantime, my list of questions keeps growing, about this possible diagnosis.

Thanks for taking the time to point me to that journal, it's much appreciated.
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739070_tn?1338607002
You are quite welcome! I didn't have time to explore the entire site but plan to do so soon. Probably should right now, since I have another appointment with my newest neuro tomorrow. Also, got my records from the MS Center I was at...interesting comments, still think he might be full of beans. Need to read it, not skim it, before I decide. If so, he can be the beans for Friday's weenie roast.

Good luck with your GP tomorrow and let us know what you find out.

Rendean
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382218_tn?1341185087
An update:  I saw my GP last week; filled her in on my appt with my neuro and that I am being tested for NMO.  She wasn't familiar with this condition, but looked it up while I was there and together we went over the symptoms and diagnotic testing.  We noticed that she was cc'ed on the lab requisition from the MS clinic, but she had not received the report yet.  

She called me back on Friday (yes, some doctors actually call their patients to follow up!) to say that she received the report, and that it appears the test was run to check my total IgG level, not NMO-IgG which is what I was supposed to be tested for.  She wasn't certain, but said it appeared it was the wrong test.  My total IgG was in the normal range, but this doesn't mean anything in terms of whether I may or may not have NMO, not MS.  

She told me she'd also called one of the local radiologists to get his thoughts on my last spinal MRI, to look at it with NMO in mind and get his take.  In NMO, spinal lesions tend to extend longitudinally across 3 or more vertebrae.  My MRI's have shown spinal lesions at C3 - C8, so I wondered if it is possible that some or all of these may not be separate and distinct lesions but one long one, as would be more consistent with NMO.  The local radiologist said he has never dealt with a case of NMO and is not comfortable speaking to this; he recommended a neuro-radiologist be consulted.

My GP is so great, she was reassuring and suggested perhaps my neuro is just being very thorough because of a slim possibility of a different dx, and this may be why he is being so low key about testing me, to avoid causing me anxiety.  She said that in the meantime, while I wait, she thought it was good that I was doing my research and getting myself prepared for the worst case scenario.  She encouraged me to always ask questions, make phone calls, follow up in writing, etc. and reiterated what many of us have said here in the past; be proactive with your health care, don't sit and wait for things to happen; ask if you don't understand; and ensure you're the one in charge of your medical care.  She acknowledged that things fall through the cracks too frequently and that following up is the smart thing to do, otherwise you risk being unnecessarily delayed and possibly forgotten entirely.  She said that GPs, specialists, nurses, etc. are all working for the patient, and that the patient should be the one most informed about what's going on with their health.  I really appreciate her approach; not all physicians think this way, as many of you have experienced.

I emailed the MS clinic late Friday afternoon to update them on all of the above.  I will call back tomorrow to ensure it was received and get direction on what should happen next.  If the wrong test was done, I guess I will need to have my blood drawn again and then wait, again, for the results.  

I am eager to get on with things.  I must have gone for blood work > 20 times in the past 18 months, with no problems or delays whatsoever.  Of all the times for them to muck it up!  Of course, I don't know that for sure yet, but it's looking that way.  Anyway, I'll keep you all posted.  

Thanks to all of you who have PM'ed me to check in, I appreciate your concern and encouragement.
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Sorry to hear about the muck up with your tests... more waiting for you!! How frustrating!!!  Glad that you have a great GP who is happy to ring you and answer your questions.  I should have read this post before I replied to the neuropathic pain one and asked how you were going.

I guess it is better that the radiographer is prepared to say he doesn't know rather than give you incorrect info...

Take care,
Keep us posted, been thinking of you with your waiting and wondering..

Cheers,
Udkas.
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739070_tn?1338607002
Sorry to hear about the possible muck up and all the anxiety it must have caused. Your GP sounds GREAT!  And I thought my new neuro was good...your GP has my neuro beat by a long shot. I especially like the radiologist who deferred to the neuro-radiologist. To me, the sign of a humble doc is a sign of a good doc. If they know they're out of their league and can admit it then they definitely have the patient's well-being at the forefront.

Will be keeping you in my thoughts as you redo the blood work and hope for a quick answer to the question. I believe the unknown is the worst. It's hard to be proactive if you don't know what you're dealing with.

Rendean
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719912_tn?1234394365
Hey doublevision1,

Sorry to hear about the apparent test mix up.  I had a tech throw my blood out because she thought my doctor canceled the NMO test.. I would try to find out how the wrong test was ordered, if it in fact was.

Keep being proactive in your care.  It is the best thing you can do for yourself when you are searching for answers,.   You can call the Mayo lab and find out if they have done your test and the results can be sent to you.  You will need a order number that identifies you.  I believe that the lad that drew your blood can provide you with this.

Peace.

JJFL....
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382218_tn?1341185087
Do you know if Mayo is the only site that processes the NMO-IgG test?  I was thinking that perhaps one reason it takes so long to process is that it is shipped elsewhere, but I assumed mine would be done at some major centre within Canada.  I have read the history on this diagnostic test and how the specific antibody was identified and linked to NMO by researchers at Mayo, though it never occurred to me that my sample might have been shipped there.  But perhaps it was?  I think I will add this to my endless list of questions, lol.
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649926_tn?1297661380

  I think you may be on to something. My recent labwork was sent out to several labs
and the NMO was the only thing on the list that was sent to The Mayo Clinic. Maybe they have exclusive testing since it was their researchers that found it.

Can't wait to hear the answers to your list of questions :)

Erin
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719912_tn?1234394365
HI doublevision1, Erin,

At one time it was only done at Mayo and mine has to be sent there.  You will have to call your local labs and ask if they run the test in Canada.

I know that people in England were not happy about having to wait for there blood to get over to the Mayo Clinic.  The site given above http://www.devic.org.uk/gayle.php  is where I saw that information.

I did find this though  "This intellectual property is licensed to a commercial entity for development of a simple antigen-specific assay to be made available worldwide for patient care. The test will not be exclusive to Mayo Clinic."  from this site, http://www.neurology.org/cgi/content/abstract/70/5/344

Peace....

JJFL..  
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719912_tn?1234394365
HI doublevision1, Erin,

At one time it was only done at Mayo and mine has to be sent there.  You will have to call your local labs and ask if they run the test in Canada.

I know that people in England were not happy about having to wait for there blood to get over to the Mayo Clinic.  The site given above http://www.devic.org.uk/gayle.php  is where I saw that information.

I did find this though  "This intellectual property is licensed to a commercial entity for development of a simple antigen-specific assay to be made available worldwide for patient care. The test will not be exclusive to Mayo Clinic."  from this site, http://www.neurology.org/cgi/content/abstract/70/5/344

Peace....

JJFL..  
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382218_tn?1341185087
Well, the saga continues....

The nurse from the MS clinic called me today to say my neuro does in fact want me to have the lab work done again for NMO-IgG.  I asked is this because they did the wrong test, she replied that they hadn't received anything at all.  I thought this was odd since my GP got her copy last week, and I did let the nurse know that it appeared to my GP and me that I was tested for "IgG" level; not NMO-IgG.  Anyway she faxed me another requisition to bring to the lab.  

I stopped at my GP's office first and asked for a copy of my lab results (the one for the wrong test) and asked the receptionist to fax a copy to my neuro's office so he can see what actually was done.

Went to the lab at 3:48pm, the cutoff is 3:45 as the close at 4pm; but I was insistent they do my test today as it is due to their error that I had to have it redone in the first place.  They were good about it, once I politely pointed that out!  I also pointed out the specific test I need to have done, to ensure they didn't miss it again.  None of them had ever heard of it (not surprising to me, neither had my GP, sounds like it is very rare indeed), so then I waited patiently for 45 minutes while they phoned their main lab at the university hospital in Edmonton, to find out how they were supposed to properly code my sample, since they couldn't find it in their database.  Finally that got sorted out and they took my sample.

I did ask if the test was processed in Edmonton or elsewhere, and I did mention the thing about Mayo to the lab tech, but she said she knew nothing about it.

You know I'll be on top of this to try to ensure this doesn't fall through the cracks again.  It is frustrating, like I said previously, up till now everything has gone so smoothly for me in terms of all my diagnostic testing.  It's maddening that the one time it gets really mucked up is when it matters the most.  

So I'm just busying myself while I wait. I've kind of pushed it to the back of my mind as much as possible, because no amount of worrying or hoping or stressing or wishing will change the outcome.  If I have NMO, I have NMO, and I know enough about it now to know that if this is the case, it will significantly change my game plan.  I'll just have to deal with it, if/when the time comes.  I just hope I know soon.

Oh, once this is all settled, I do plan to write the lab to advise them of the error.  Not to get anyone in trouble or make a big fuss, but to let them know this occurred so that they can do something to tighten their controls to avoid errors like this. NMO is not life threatening (at least not imminently), but the error could have been made on a matter more urgent than mine.  They had their values statement posted on the wall; there was one about having high quality standards and ensuring things are done correctly, and another about taking responsibility for their actions.  So I would hope they would be open to my feedback.  
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649926_tn?1297661380
  Wow it sounds like you have been through the ringer! Doesn't it seem like once one thing goes wrong it just keeps snowballing?

I like your attitude about keeping busy and trying not to worry because it won't help the outcome or speed things along. I know this is easier said then done but it is a great attitude to have.

I am still waiting for my own results. I see the neuro next week. Like you I am trying not to dwell on it but I admit I am a little anxious. I hope that she has the results and is ready for a lenghty discussion on where we go from here.

Hang in there - I have been thinking of you so keep us posted.

Hugs,
Erin :)
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Avatar_f_tn
Hi DV and Erin,

I am praying that you both get your results soon and that the outcome isn't NMO.

My heart is with you both and I want only good things for you.

Take care of yourselves!

Hugs,
doni
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382218_tn?1341185087
Doni, thank you for your warm thoughts and concern.  I do appreciate the sentiment very much.

Erin, you are absolutely right, it does seem that when one thing goes wrong, it does seem to snowball!  If I were a superstitious girl I would think I was cursed!  lol  Really I think this is just a situation that happens all too often, that things fall through the cracks due to human error.  For a while there I did think things had gone a little TOO smoothly for me, as I didn't have the issues and frustrations that others here have had to deal with, even my friend Rena who's just a 5 hour drive down the highway from me.  So I guess it's my turn now to deal with a few mishaps!  I won't allow myself to get worked up about it, that doesn't do anybody any good; I'll just try to stay on top of it and do what I can to control the situation, to ensure I get my results as soon as possible.

I'll be thinking of you as well as MOJ039, as all three of us are awaiting the results of this test.  Let's be sure to keep each other posted.
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719912_tn?1234394365
Thought you guys might want to see this...

Clinical Information

Neuromyelitis optica (NMO, also known as Devic's disease and
optic-spinal multiple sclerosis) is a severe idiopathic inflammatory
demyelinating disease that selectively affects optic nerves and
the spinal cord, typically spares the brain, and generally follows a
relapsing course. Within 5 years, 50% of patients lose functional
vision in at least 1 eye or are unable to walk independently.
In North America, the proportion of nonwhite individuals is higher
among patients with NMO than among those with classic multiple
sclerosis. During acute attacks, the cerebrospinal fluid (CSF)
contains inflammatory cells, but often lacks evidence of intrathecal IgG synthesis.


Many patients with NMO are misdiagnosed as having multiple sclerosis,
due to earlier misconceptions that NMO was a monophasic disorder,
and was not associated with brain imaging abnormalities. Importantly,
the prognosis and optimal treatments for the 2 diseases differ. NMO
typically has a worse outcome than multiple sclerosis, with frequent
and early relapses. Plasmapheresis is more beneficial for patients
with NMO than for those with multiple sclerosis. Early diagnosis and
treatment are important to reduce the morbidity of NMO.


Seropositivity for NMO autoantibody IgG (NMO-IgG) allows early
diagnostic distinction between NMO (73% positive; 91% specific) and
multiple sclerosis (0% positive). NMO-IgG is uniformly negative in
patients with classical multiple sclerosis, for which no biomarker is
currently recognized. This distinction is important both prognostically
and therapeutically, because optimal treatments differ for NMO
(immunosuppression) and multiple sclerosis (immunomodulation
with beta-IFN or glatiramer acetate).

Reference Values
Negative

Interpretation
A positive value is consistent with NMO or a related disorder, and
justifies initiation of appropriate immunosuppressive therapy at the
earliest possible time.

http://www.mayomedicallaboratories.com/test-catalog/Clinical+and+Interpretive/83185

PEACE...

JJFL.
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Avatar_n_tn
i had a result of 6, but the neurologist did not know what it meant and was going to call the lab on Monday.  Does anyone have any thoughts what that might mean?  I have had optic neurits 2 times but I have Lupus and the second time was last April.  I am now having a problem again and I am getting IV Cytoxin monthly for the optic neuriitis.  I missed 1 month treatment in December from stomach virus.  My eye pain started again approx. 5 weeks ago.  It is getting worse and I am scared.
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1917408_tn?1329427500
It sounds like it is going to be a long weekend of waiting for you! I hope you get your answers quickly on Monday!

Valerie
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