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Tonia
@tonia

Posts: 5
Joined: Feb 27, 2012

Looking for info about Neuromyelitis Optica (NMO)

Posted by @tonia, Mar 4, 2012

Hi I came here looking for the same kind of info about my NMO chronic pain . I want to know if my head, neck, back,and eyes are ever going be painfree again. I was diagnosed 3 months ago. I do want tell you my spasms did go away slowly but your spasms seem to be worse then mine. I’m really sorry. My Dr gave me diazapam to help and it did. I also take gabapentin and oxycodone. They also have me taking azathioprine. This is to help supress any future accute attacks. You are the first person I have talked to that has what I have. So I’m sorry I couldn’t be of more help but Ijust had to reply.. Thank you for that and good luck finding the info you need. Tonia @luckypaubla1213

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luckypaubla1213
@luckypaubla1213

Posts: 5
Joined: Mar 03, 2012
Posted by @luckypaubla1213, Mar 5, 2012

I truly hope they do, it scares me to horror to believe that these pains would never go away. The Institutions working on a CURE FOR N.M.O., need to be BLESSED BY GOD, and given the knowledge and understanding to come up with an effective cure, and or treatment for our pain. I asked my Neurologist if my TONIC SPASMS would go away, or subside and she said, that because of the Legion on my spinal cord(Which is one factor used in the Diagnosis of NMO), that it didn’t seem likely that this would just go away, If anyone has a different response, please let us know. GOD BLESS YOU, Paubla.

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darlarose
@darlarose

Posts: 2
Joined: May 17, 2017
Posted by @darlarose, Tue, May 16 7:02pm

I was recently diagnosed with NMO. It was a very scary experience especially for my family. How long have you known you had NMO?


Jk
@jknight

Posts: 1
Joined: Jul 11, 2017
Posted by @jknight, Tue, Jul 11 3:44pm

My husband was recently diagnosed with NMO, he received 5 IV bags of steriods is now taking pill prednisone also received 5 plasma exchanges. His left hand and arm were unuseable like paralyzed with a stroke when went to ER.but stroke was ruled out after tests his spinal fluid was sent to the Mayo Clinic for tests and NMO was the diagnosis. after the treatments he can use his hand and arm but not back to normal. Was in the hospital for 22 days. now that he is out has appt. with new Neurologist to followup and prescribe ongoing meds. Also scheduled to go for outpatient therapy.


Colleen Young, Connect Director
@colleenyoung

Posts: 3550
Joined: Jul 23, 2014
Posted by @colleenyoung, Wed, May 31 8:39am

Hi @darlarose and welcome to Connect.
We have had a few people talking about Neuromyelitis Optica (NMO) here is the past. I’m tagging @lovelife100 @nece12 @lemonmeringue @luckypaubla1213 @tonia @genevieve in the hopes that they will return and share their experiences with you.

I understand that NMO can be difficult to diagnose and is often misdiagnosed as multiple sclerosis (MS). How were you diagnosed? What symptoms are you dealing with at the moment?

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