NMO Antibody Blood Test

[golfwidow]

Well, it is Saturday and I am finally ready to give you all another posting. After several phone calls, one to the Lab who does the bloodwork and several more to my doctor's nurse, who then had to call the Lab as well, I have some info..
--the NAB test has to be done at least 8 hours after a Betaseron injection, who knew ? that was never in my lab orders. --If the test comes out positive for antibodies, they then have to do another different test. $$$

My question to the group is this.......who has had this test ??? Anyone ? And did you get any pre-testing info like the minor detail above ?
thanks for all !!!

[DancesWithPugs]

The plot thickens!

Well, it is Saturday and I am finally ready to give you all another posting. After several phone calls, one to the Lab who does the bloodwork and several more to my doctor's nurse, who then had to call the Lab as well, I have some info..
--the NAB test has to be done at least 8 hours after a Betaseron injection, who knew ? that was never in my lab orders. --

I'm assuming the blood needs to be drawn at least 8 hours after the Beta injection. Who knew? Well, your doctor should have!!

So, was the blood drawn at the right time or too soon? If the latter, you shouldn't have to pay for that lab work no matter what the result.

If the labwork comes out positive for antibodies and the blood was taken too soon, does that mean the results are not accurate?

Sorry for all the questions, I'm just really curious how all this works and hope this thread helps someone else who may end up facing a similar situation.

If the test comes out positive for antibodies, they then have to do another different test. $$$

Will this additional test be necessary regardless of when the blood sample was taken?

My question to the group is this.......who has had this test ??? Anyone ? And did you get any pre-testing info like the minor detail above ?
thanks for all !!!

I'm on Tysabri, and have never had to have an antibody test (knock on wood), but I hope someone comes along soon who may be able to shed some light on this for you.

If this weren't so expensive and time consuming for you, it would be funny.

[golfwidow]

Hi Danceswith Pugs !

I will have to have blood drawn again as it has now been over a week......and it was drawn the morning after an off night. Betaseron is every other day.
I am questioning the knowledge of my neuro and his office.
Finally found one nurse who was up on things and willing to go the extra mile. ( although in reality everything she did should have been routine !)
After my initial angry posting, I am now finding the humour in this....so be my guest and have a good laugh !
But still, if anyone has had this NAB test for Betaseron, would love to hear your story !!!

[Ginny73]

New here

Hi all....first time here and all kinds of questions. My eleven year daughter has been through the worst year of her life. We almost lost her in September when she was misdiagnosed with having hormonal migraines which turned out ( after 10 days of watching her deteriorate beyond belief they did an MRI of her brain and spine) to be a very serious form of demylinating disease. At first she was diagnosed with ADEM (acute disseminated encephalomyelitis)....but as months went on the focus shifted to a possible diagnosis of MS.

We have been to see an amazing neuroligist at Sick Kids hospital in Toronto....and she is now being investigated for NMO. ( she has a very elongated lesion on her spinal cord, and a cluster of lesions on her brain stem and part of her symptoms including sever headache and uncontrollable vomitting at the onset). She also has brain lesions, impaired bladder and bowel function and impaired vision in her left eye which is new in the last few weeks. I have been researching it day and night for the last week and i am paralyzed with fear right now.

I need all the help i can get...how long does it take for the test results to come back from Mayo and has anyone ever heard of a child this age having this? Any help/advice anyone can offer will be very much appreciated.....thanks

**Post broken into paragraphs by Moderator for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print.**

[Redwings]

Hi Ginny:
If you haven't already been to the Guthy-Jackson Charitable Foundation website, go there immediately: http://www.guthyjacksonfoundation.org/. Make sure your daughter's doctors are aware of the site as well.

Yes, children do get NMO. Fortunately, your daughter's neurologist recognized all of the signs and ordered the NMO antibody test. My last NMO test was done a couple of months ago and the results were back in about a week.

I'm in the NMO spectrum myself, and from what I've learned about NMO, your daughter's presentation is so suspicious for NMO that it might be beneficial to plan to treat her right now as if she has NMO -- even before the test results come back.

To further complicate things, some people with a classic presentation of NMO never test positive on the antibody test. So even if your daughter's test is negative, by all appearances she should be treated as if she has NMO and not MS. The standard MS meds not only are not beneficial for NMO, at least 3 studies have shown that the interferons used to treat MS may actually be harmful for NMO. So it bears repeating: Your daughter's presentation is so suspicious for NMO that it might be beneficial to plan to treat her right now as if she has NMO

With NMO, it's very important to get your information from medical authority sites like the Guthy-Jackson Foundation, the Mayo Clinic (http://www.mayoclinic.org/neuromyeli...ica/index.html) and the Transverse Myelitis Association (http://www.myelitis.org/nmo.htm), and from scholarly articles. Those sites have links to other resources.

The Mayo Clinic estimates that thousands of people with NMO are misdiagnosed, usually with MS (I was). And time lost is function lost. So it's fortunate that your daughter's doctor isn't wasting any more time speculating. My thoughts are with your daughter and you, and I wish you both all the best.

[carol74]

I understand why you are pissed I have 4 years of NMO and MS missdiagnosed and still no treatment.

[Ginny73]

Thank you

Redwings:

Thanks so much for your very informative reply. I have spent the last couple of evenings on the Guthy-Jackson site and have found some very good and encouraging information as well as some stories that hit so very close to home.
Now we wait for word from Mayo about the blood test. This is the longest week of our lives....many thanks for your help. Much appreciated.

[golfwidow]

Hi Ginny,
Just wanted to say I have been following your post and keep you and your daughter in my prayers.

[Ginny73]

Thank you so much Golfwidow.....it's such a comfort to know we are not alone...the scariest thing is not knowing exactly what kind of sinister disease we are dealing with.
Thank you for thinking of us...i am so glad i found this website.

[Patti3250]

NAb antigen/antibody test

I too was given an order to have usual hep/cbc regular blood work as well as the NAb antigen test. Like you, the neuro did not indicate what specifically so they wont be able to run it (the lab). I have a lab appt at 2p tomorrow.I am hoping that the neuro's office can figure out what the accurate name/code is for the interferon they are testing for and fax to the lab so there is no delay. One would think the neuro's office would have handled this before sending me to the lab.

Lets hope it can be resolved and I can have this completed tomorrow.

Moral of the story is; if you are sent for an antigen/antibody test you must know what specifically they are testing for (you know but there are names and codes) which has to be a part of the original order or the neuro's office speaking directly to the lab and/or a fax.

Geesh - why does everything have to be so difficult? Goodness.