NMO-IgG test for NMO/Devic's disease

[doublevision1]

No news yet on the results of my NMO-IgG test for NMO/Devic's disease.  I called the lab today and they advised me that my sample was shipped out to Mayo on March 12 and that Mayo had responded to my neurologist in writing on March 26.  So I'm hoping this means that I'll know the result sometime this week.  Since a neg result does not rule out NMO/Devic's (30% of NMO patients will test negative for this antibody), I will not be totally relieved if I test neg.  I am not finding much info on what to do next if the result is neg, so will be eager to have that discussion with my neuro.

I am curious to get your opinion on how this situation has evolved over the past couple of months.  When my neuro mentioned casually that the results for this particular test are often slow to come back, he said it's because they are mailed rather than posted electronically.  It's not that this isn't true, but I find it curious that he didn't point out it's because they are being mailed from the Mayo Clinic.  I just assumed they came from the lab that collected my sample, because he didn't say otherwise.  This seems like a deliberate omission to me, probably not to worry me by mentioning the word "Mayo" and the fact that my sample was actually being sent out of the country for analysis.  I think it comes across as a much bigger deal when you look at it that way.

I also found it odd that when he mentioned he was testing me for NMO, he called it a 'more rare form of MS'  and didn't offer anything else at that time.  All of the recent literature I've since read on this condition states that this is no longer considered to be the case, and that NMO is clearly a distinct and separate disease.  As a MS researcher, I'm confident he is up on the latest school of thought about this disease.  

Further, I think I mentioned before that at first I didn't even know why I was having this blood test done.  Tthe requisition was mailed to me by my neuro's office with no explanation attached, so I naively assumed the test was routine monitoring for my Copaxone treatment.  I only found out otherwise when I had my next regular appt with him, nearly a month after I had had that blood test done.

What do you think about how this has all transpired?  Do you think it's odd that he hasn't been more up front with me from the start on why he ordered the test to begin with (he later told me it was b/c of my ON episode in Dec); where the test was sent for analysis; and the words he used to characterize this condition as being a form of MS?  My sense is that his approach is deliberate, and an effort not to worry me and to keep the whole thing low key until it is clear whether or not I have NMO and not MS for which I have been treated for the past year.

I think I mentioned before that it can be like pulling teeth from this neuro, unless I am prepared with my research and questions.  When I am prepared to ask intelligent questions, he always answers me respectfully, directly and in detail, and doesn't patronize me.  But if I don't think to ask certain questions, he doesn't volunteer much info.  I was not prepared for the NMO curve ball thrown at my last appt with him, so I had no questions.  Clearly I now have many!   I do plan to give him my feedback on how I would prefer to be kept apprised of my own medical situation and of any concerns he may have about my condition that he is following up on.  

Anyway, I am wondering what your take is, regarding this neuro's approach to this situation?  How does his style compare to that of your own neuro?  

[JJFL]

Hey doublevision1,

Something doesn't sound right.. I would rattle some cages and call the MS clinic and ask for the Director, Manager, Person in charge. What ever there called and see if they can move your neuro to give you some answers.

Now, this will cause some friction between you and the neuro, to say the least. It sounds like he wants to wait until July.  I hope you find out soon.

Peace...

JJFL.

[doublevision1]

My apologies that I am so late in my response to everyone's thoughtful and helpful feedback.  I've been busier than usual lately, not a bad thing esp since I am none the worse for wear, but I seem to have little down time lately to visit the forum and stay up to date on everyone's posts.  There have been lots of good topics and new people, and so much I want to chime in on!

I do concur with everyone's assessment of my neuro's style and intentions.  I'm still comfortable with him and am just going to need to stay on my toes for any further curve balls and be ready to fire as many questions as I can think of.  Never did think too well on my toes, usually I need time to mull things over.  

So as my friend Ess has let you know, the NMO-IgG test did indeed come back negative, which pleases me and leaves me cautiously optimistic.  If it weren't for those darn 30% false negatives.  I received the results from my GP's office, actually from a doc covering my GP's vacation, so of course he had no idea of my history or this lab work.  He hadn't heard of NMO and seemed intrigued about it.  

I noted that my results were received by my GP on March 23.  I would assume the MS clinic received them on or around that date, give this was where the order originated from.  Still no word from the clinic.  I am thinking that despite my repeated requests of the nurses to follow up with me regardless of + or - result, they are taking the 'no news is good news' approach which they said is their 'policy'.  One of the nurses even told me she had forwarded my email to my neuro, suggesting he may call me directly.   No news is good news would normally be fine with me, except for the darn 30% false negatives!  I have done so much research on this disease ever since it was on my radar screen and everything I've read said more follow up is indicated on neg results, to confirm the result.  The only LP I've had, in 2007, was neg of O bands.  If it is still neg after all this time since my dx, it would be much more suggestive of NMO than MS.

Not sure what my next move will be.  My next scheduled appt with neuro isn't till July.  In the meantime I may either write him a letter asking what follow up is planned and what I think that should include, or, ask my GP to do so on my behalf.  Probably the latter.  I could call and ask for an earlier appt,  but as my neuro is 450kms away, it's not practical to go all that way only to find out he's doing nothing further at this point, even if he has good reasons for this approach.  A quick email or call would be nice, but don't think that's going to happen.

Will keep ya'll posted........:)

[MOJO39]

Sorry late..like usual ,
But like you I have been waiting for my test from the Mayo clinic.  My doctor also said the same thing that it was a rare this and that...but the more research I did the reason they sent the test to the Mayo clinic is because they are the one who discoered the disease.  They also are the only ones who have the test...they found the test to look for what markers...but who knows..I hope all goes well
MOJO 39 Michelle

[Quixotic1]

Hi, I have to say that I agree with everyone above.  I don't think your neuro was being too secretive nor condescending.  I suspect, like you, that he plays his cards close to his chest.  Would I tell a patient where the lab was being sent to?  In all honesty, I rarely knew except for a few very esoteric labs.

The truth is that there are all sorts of tests that are only run by a few labs in the country - or in the world, for that matter.  My assay for neutralizing antibodies was sent from Washington to Boston's Athena Labs.  My doc said that that was the place that had the best accuracy and reproducibility.  But, my neuro is forever giving me more info than I need - I think as a nod to my background.

I always tried to warn people that certain tests - typically genetic ones - could take many weeks to months.

From what you have said your neuro is short on communication - he may have little clue about what a patient really needs to know.  But, he does answer specific questions.  Maybe he is socially inept and just doesn't think to offer info.  Or he may be of the type that doesn't discuss "possibilities."  This keeps him from having to venture into areas that may not be pertinent once he has more info.  A doc can literally be held hostage in a room by a patient's "what if's."  

I think your neuro seems very good, at least for someone as intelligent as you.  He thinks, he acts, he is respectful, he seems smart, but he is just not forthcoming until asked.  A more naive or uneducated person might feel adrift in the wind under his care.

Personally, I'd keep him.

Quix

[rendean]

I concur that your neuro sounds wonderful and seems to have some of the same attributes that my academic neuro  has. He is older and does seem to be totally engrossed when he is talking to me directly. He does not offer information unless I ask specific questions but then he answers truthfully and without fanfare. Perfect example, last week he finally returned my call regarding my unrelenting leg pain. I timed it wrong and he called while I was in the middle of the grocery store. He answered all my questions (which I had tucked into my pocket -not as dumb as I look ;-) and ordered another prescription to help the pain. When I began to ask what if...regarding Wednesday's lip biopsy,,,he finished the sentence for me and said it's MS.  

Your neuro seems much the same. He gives you what you need, when you need it but not so much information that you drown in the doubt and fear of the unknown. My vote is to trust him and believe that he had your best interests at heart about not expounding about all the details of the blood test. What good would it have accomplished for you to worry even one more day. None.

Take Auntie Ess's advice and try your best to relax. Or go for some new Wilma feet :-)

We're all here waiting with you. Good luck!

Rendean

[biowham]

I think docs often operate on the "you don't have to tell everything you know" principle (Quix? What do you say?) and that it's better to reveal info on an as-needed basis, i.e., when the patient asks directly. I'm sure they run into scads of people who (a) don't really understand what they're saying or get confused by it and then (b) freak out about it, sometimes creating unnecessary anxiety for everyone.

Double, I wish you had your danged results. I'm dying of curiosity about this. I can't speak to what's motivating your neuro, although ess does seem on target.

Bio

[hbananas]

I think lots of lab tests we have done get sent elsewhere, so it's pretty routine in the minds of those who are ordering them.  For instance, I live in a large mid-US city, complete with 3 medical schools.  Yet, my LP was sent to Mayo for all the analysis.  There just must not be very many places that do electrophoresis.  When I had the NMO test done, it was sent there, too.  By the way, you were polling people for reference ranges on that?  Mine just says negative.

[Fluffysmom]

I tend to agree with ess; he's most likely not wanting to alarm you until the results are in, and will help you cross that bridge when you come to it, if necessary.

I think that making it clear to him that you want to be "in the loop" when it comes to your medical situation and concerns he may have about your condition and follow-up.  He may still choose to remain tight-lipped; it may just be how he operates.

My PCP was horrified that I had picked up my brain MRI results that reported many lesions, most likely multiple sclerosis.  She turned red in the face, and said that she would never tell a patient information like that on a Friday, let alone allow them to pick up their own results on a Saturday.

I told her that I did have a right to see my results, and she was still really upset.  I told her to look at me, that I was fine, that I don't panic, I research.  I had my best friend with me, who assured her that I was fine.

I think that she'll stick with her policy of not sharing news like that with patients until she thinks they're able to handle it.  She's actually my regular PCPs partner, who fills in when my PCP isn't available.  My PCP knows me, and understands.

I think it's great that you're prepared with research and questions when you see your neuro, and that he answers them so well.  You understand him, and can work with him.

My MS neuro doesn't volunteer information. When I ask her carefully prepared questions, she gives several possible answers.  I asked her why I had neurological symptoms which sent me for a brain MRI if my lesions were from small vessel ischemic disease.  I asked if ischemic lesions caused neurological symptoms.  She didn't have a clear answer.

The next time I saw her, I was in a flare, and thought I was getting somewhere.  She said that the symptoms I was experiencing would be from my cervical spine, but that they weren't outstanding enough to warrant a new MRI until Spring.

A month later, she told me that she thought that I was having small strokes caused by my (benign) heart arrythmias, and those strokes caused my symptoms.

Your neuro sounds like a gem, even if he's hard to get info. out of.  At least you know how to get it.

I hope you can find a way to relax and let go for a while.  I find that a couple of pieces of See's candy eaten mindfully can help, or watching a really funny movie without commercials, or going out for dinner with a group of friends and laughing a lot.

Wishing you the best,

Kathy

I know it must be difficult waiting for the results to this test.  

[Lulu54]

Hi DV,
Back in January I had special blood work done as part of a look whether my Prinzmetal Angina is in my DNA - they took more blood than when my MS workup was done and then shipped it to 4 or 5 different labs, including one that specialized in this DNA marker test that no one else does.  

It was really interesting to see where my blood went, including Pennsylvania and California.  I always thought labs anywhere could do all the tests but now I know differently. The specialist I saw did tell me that my blood was being shipped out and it would take a while to cook up the results, but he didn't tell me where it was going.  I only got answers from reading my lab results.   I would guess that your neuro didn't even think it was an issue to bring up that your blood was going to Mayo.

As I understand it, there is no routine blood work done for those of us on copaxone.  It doesn't have the liver risks that the other DMDs do.

My guess is your doctor works on a *need to know* basis - from what you write he doesn't volunteer much but doesn't intentionally hide information either.  

I hope your followup appt. is soon and you will get some real answers instead of more questions.


my best,
Lulu

[essdipity]

You know, for many months you have told us you have a great neuro, and you do. Loads of us would love to have one like yours. It doesn't matter that he can be a bit of a clam. When you ask him things directly he answers directly. Maybe it's just not his personality to speculate much, in front of his patients or otherwise. His scientific training may keep him from getting ahead of the data.

Actually I think he's right in not mentioning Mayo, etc. There really would be no point in alarming you. Yes, I know, you aren't the alarming type, but he probably wasn't taking that into consideration, and was just going by his usual way of operating. That probably accounts for his characterization of Devic's as a rare form of MS too. I'm sure he knows the current thinking on this, but to him that's an unimportant distinction at this point. If you do have it, he'll go into detail then. It's good if his approach is deliberate, but either way it doesn't matter.

So all in all I think you could be reading too much into all of this. I know it's because you're the action type. So am I, and that's why I see where you're coming from. But you have good evidence that you'll know the test's outcome within a day or two, and then most of your speculation could become moot. So try to relax a bit. What will be will be, and you'll cope well with anything that comes your way. Just don't overthink it too much.

"Auntie ess"