NMO IgG Antibody

[Kristi]

aka Neuromyelitis Optica antibody

I've been meaning to post this sooner, but didn't have the correct info for it and wanted that before I posted. I got it from my Lupus doc at my appointment last week. I hope I typed it right. Having a hard time reading my doc's writing.

A doctor from Johns Hopkins has been calling for the last couple of months. I call him Dr. B because it's just easier than saying or even attempting to spell his name. He had me have this NMO IgG test done to see if I would ever have a relaspe of Transverse Myelitis. He's made many calls to the house and has also talked to my Lupus doc and his nurse. He got the results back and called and said that I would never have a relapse. That's good to know, but really there is no way to prove that. Never is a long time. I never thought of having a relaspe though and good to know they have a test for it.

He also wants me to be retested for the antibody (maybe Dr. Wise can help with the name of it) that causes blood clots. Back in 2003 I tested really high, but my Lupus was also out of control then. He was shocked when my Lupus doc says he doesn't check it regularly. I have never had a clot even though I have the antibody. LOL Lupus doc sees no reason to test for it monthly. I can't remember if I will be tested for it when my port gets flushed or not this month.

Dr. B is a very nice guy which leads me to my next question. Why all the sudden interest in me? I met with Dr. Kerr at John Hopkins back in 2002, but other than an email about Procrit to him a few years ago I haven't heard much out of them. Next time Dr. B calls I am going to ask why the interest in me. Hopefully it is something good. I know they are working with a company to hopefully do stem cell transpants this year though I don't think that is why he is calling. Either way it would be good to know why he wants all these tests done. I asked a lot of questions about these tests, but never the main question about the interest in me.

I'll keep you updated if I hear anything new.

[lynnifer]

I thought I read somewhere that since they have the testing capability, they might as well get people tested (in the States anyhow).

Being that we were parlyzed younger from TM, (15 & 12 respectively), our chances of a relapse are nil. I'm surprised they tested you knowing that as well.

Maybe they're considering you for upcoming trials? Is that something you would be interested in?

Found this article that reccommends everyone with TM get tested:
http://www.myelitis.org/newsletters/Newsletter6-2-02.htm

[Kristi]

Maybe they're considering you for upcoming trials? Is that something you would be interested in?

Oh hell yeah. I'd be on a plane ASAP. When I read that this Utah company was going to be doing trials with John Hopkins I called them. For the first round (if FDA approves it) they are looking for people who are idiopathic cases and since they are certain I got TM from a Lupus flare I didn't qualify, but would consider me later on.

In a way it is good. I'm all about being spontaenous and giving it a try, but I have this voice in my ear (my daddy) saying Kristi - you don't want to be the first. Let them try it on a few people and see what the results are before you jump into this too quickly. My Lupus doc is the SAME way. My dad is all for stem cell research he just wants to see results first. Me, I'm ready and willing whether I am first, in the middle, or at the back of the pack.

Until Dr. B called I knew nothing of this test. It's good to know.

[lynnifer]

Umm hello I'm idiopathic!!! What's the company from Utah (willing to travel here lol)

[Kristi]

I don't know the name. It was an article I saw on Google. I have TM on my Google Alerts just in case something new and interesting comes my way. This was probably October, November when I called them.

I'll do some searching and see if I can find it for you this weekend. I will need a study break from the two tests I am cramming for. :)

[Sue Pendleton]

http://sci.rutgers.edu/forum/showthread.php?t=95697

The above should help, Jenn.

[wildwilly]

Neurology. 2008 Apr 23

NMO-IgG predicts the outcome of recurrent optic neuritis.

Matiello M, Lennon VA, Jacob A, Pittock SJ, Lucchinetti CF, Wingerchuk DM, Weinshenker BG.

From the Departments of Neurology (M.M., V.A.L., A.J., S.J.P., C.F.L., B.G.W.), and Laboratory Medicine and Pathology (V.A.L., S.J.P.), Mayo Clinic College of Medicine, Rochester, MN; and Department of Neurology (D.M.W.), Mayo Clinic College of Medicine, Scottsdale, AZ.

OBJECTIVE: To determine the prognostic value of neuromyelitis optica (NMO)-immunoglobulin G (IgG) in patients with recurrent optic neuritis (ON). The aquaporin-4-specific serum autoantibody, NMO-IgG, is a biomarker for NMO and relapsing transverse myelitis. Recurrent ON may herald multiple sclerosis (MS) or NMO, or it may occur as an isolated syndrome. The prognosis and response to therapy differs in each of these contexts. METHODS: We evaluated 34 patients who were tested for NMO-IgG between 2000 and 2007 and who had two or more episodes of ON without satisfying a diagnosis of MS or NMO prior to serologic testing. Clinical data were available for 25 Mayo Clinic patients (5 NMO-IgG positive and 20 NMO-IgG negative) and for an additional 9 seropositive patients whose serum was referred to the Mayo Clinic Neuroimmunology laboratory for testing. RESULTS: Twenty percent of the patients with recurrent ON seen at Mayo Clinic were seropositive. All NMO-IgG-positive patients (vs 65% NMO-IgG-negative patients) had at least one attack with visual acuity in the affected eye worse than 20/200 (p = 0.05). In seropositive patients for whom long-term follow-up was possible (median 8.9 years after the initial ON), 6 of 12 (50%) experienced an episode of myelitis and fulfilled criteria for NMO. In contrast, 1 of 15 seronegative patients (6.7%) fulfilled McDonald criteria for MS (p = 0.03). Seropositive patients had a final visual score which was worse than that of seronegative patients (p = 0.02). CONCLUSIONS: Neuromyelitis optica (NMO)-immunoglobulin G seropositivity predicts poor visual outcome and development of NMO. Seropositive recurrent optic neuritis is a limited form of NMO.


http://www.ncbi.nlm.nih.gov/pubmed/18434643?ordinalpos=4&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_RVDocSum

[Demarion]

That sounds pretty good to me... I just want to say thank you on this topic...