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Nueromyelitis Optica
Well, saw my Neuro on Wed Nov 27th and he wants to now treat me for Nueromyelitis Optica instead of MS, even though my test has not come back yet showing the anti bodies.
UGH WTH does this mean??!! I have read all that I could about it but I'm still confused. This is BS and I'm so over it. I have been about 90% numb for a month now, just wanna get back to my normal self or at least what it felt like to be somewhat normal. How did this all happen.... :(
UGH WTH does this mean??!! I have read all that I could about it but I'm still confused. This is BS and I'm so over it. I have been about 90% numb for a month now, just wanna get back to my normal self or at least what it felt like to be somewhat normal. How did this all happen.... :(
Best Answer
On what specific evidence (symptoms, MRI results) is your neuro wanting to treat you for NMO?
Hi HR - Last week you mentioned that you were going to see your neuro on Wednesday and the he was going to start testing for NMO/Devic's. Did he?
Kyle
Kyle
My eyes betrayed me!
I now see he wants to start treating you for NMO/Devic's. What is is suggested course of treatment?
Kyle
I now see he wants to start treating you for NMO/Devic's. What is is suggested course of treatment?
Kyle
My MRI showed a lot going on in my upper spinal cord...sorry don't know the terminology. Here are his words, love him he typed it all up and printed it for me!!
"Recurrent myelitis with longitudinally extensive lesion in cervical spine C2-6 this month and T8-9 June 2013. I am most concerned about relapsing neuromyelitis optica spectrum disorder, even in the absence of optic neuritis. I favor this diagnostically over MS due to severity of attacks, poor response to IV corticosteroids, preference for spinal cord and long lesion in cervical cord."
Well if my numbness doesnt go a way with the Actar in the next 2 weeks then I will need to do plasma exchanges, that will be my source of relief for any remissions I have and for permanent treatment, he wants to put me on an immune suppresent. They come in oral or IV infusions, that one is Rituximab, he is leaning towards that one. This all is mind boggling...I just don't wont to be numb anymore...lol
-Heather
"Recurrent myelitis with longitudinally extensive lesion in cervical spine C2-6 this month and T8-9 June 2013. I am most concerned about relapsing neuromyelitis optica spectrum disorder, even in the absence of optic neuritis. I favor this diagnostically over MS due to severity of attacks, poor response to IV corticosteroids, preference for spinal cord and long lesion in cervical cord."
Well if my numbness doesnt go a way with the Actar in the next 2 weeks then I will need to do plasma exchanges, that will be my source of relief for any remissions I have and for permanent treatment, he wants to put me on an immune suppresent. They come in oral or IV infusions, that one is Rituximab, he is leaning towards that one. This all is mind boggling...I just don't wont to be numb anymore...lol
-Heather
I'm a recent rituximab convert :-) I switched from Tysabri, and had my infusions early last month. One of the big benefits of rituximab is that you only need to do it once a year! Talk about time released :-)
It sounds like your doc is fully engaged. The diagnosis and treatment of auto-immune diseases is tricky. What works for on may not work for another. And absent a smoking gun test for things like MS, the diagnosing can be subjective.
One thing that is guaranteed is the need for patience :-)
Kyle
It sounds like your doc is fully engaged. The diagnosis and treatment of auto-immune diseases is tricky. What works for on may not work for another. And absent a smoking gun test for things like MS, the diagnosing can be subjective.
One thing that is guaranteed is the need for patience :-)
Kyle
Yes Kyle you are right! He is all over me and everything new that I report to him. Went in this morning and did more "rare" disease testing as well as copper and zinc levels...9 freaking vials they had to use UGH!
What scares me is that NMO (tranverse myelitis) is so rare and new that when I got the MS diagnosis my doc reassured me that I don't have to worry about my future because of the advance medicine they have now but with NMO I don't know what my chances are for relapses, you know. Like will it be years, will it be numbness, how predictable is it etc...just overwhelming really. I am 30, a single mom, almost a year into a new relationship all those thoughts cross my mind....excuse my rant lol.
What scares me is that NMO (tranverse myelitis) is so rare and new that when I got the MS diagnosis my doc reassured me that I don't have to worry about my future because of the advance medicine they have now but with NMO I don't know what my chances are for relapses, you know. Like will it be years, will it be numbness, how predictable is it etc...just overwhelming really. I am 30, a single mom, almost a year into a new relationship all those thoughts cross my mind....excuse my rant lol.
I'm trying really hard to be patient :)!
How are ya responding to rituximab?! I found a facebook group for NMOers lol and some had some mixed reviews but honestly a lot of them were also positive reviews vs negative.
How are ya responding to rituximab?! I found a facebook group for NMOers lol and some had some mixed reviews but honestly a lot of them were also positive reviews vs negative.
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Kyle