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Old 01-12-2017, 09:42 PM #11
bddouglas bddouglas is offline
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Quote:
Originally Posted by Snoopy View Post
Hi bddouglas,

I am very sorry to hear your Daughter has NMO, how difficult for both of you

An excellent resource for NMO is The Guthy-Jackson Charitable Foundation. They do have a forum which will enable you and/or daughter to talk to others with NMO. Home - The Guthy-Jackson Charitable Foundation

I know just a very little about NMO and that little bit is with NMO it's important to be treated with steroids. There is a blood test for NMO, a negative does not rule out NMO but a positive means NMO.
Unfortunately, when they tried solumedrol infusions, she had adverse reactions to them. The next steps I am taking will be to help her with disability and every resource available to help her towards her indepence. The medical part is in the doctors' hands, I can't allow myself to stress over that part. Thank you for the information, I haven't found much online. I am going to check it out now. I know our neurologist says it is extremely rare that I have MS and my daughter has NMO. I just think, "Go figure, my mom was raised on the Love Canal in Niagara Falls in the 40's & 50's, it could be a whole lot worse."
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Old 01-15-2017, 09:46 PM #12
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Snoopy thank you again for the link on NMO. There is new diagnostic criteria which will help the neurologist diagnose my daughter without trying to find a neuro-ophthalmologist.
Tomorrow, it's to the ophthalmologist so she can get assistance with Braille education and life skills management and then Tuesday back to the neurologist. I am carrying the diagnosing criteria from the website with us.
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Old 01-16-2017, 09:30 AM #13
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I am so glad you found help within the link I provided I hope all goes well for your daughter and please take care of yourself
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Old 01-22-2017, 12:19 PM #14
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Quote:
Originally Posted by bddouglas View Post
Snoopy thank you again for the link on NMO. There is new diagnostic criteria which will help the neurologist diagnose my daughter without trying to find a neuro-ophthalmologist.
Tomorrow, it's to the ophthalmologist so she can get assistance with Braille education and life skills management and then Tuesday back to the neurologist. I am carrying the diagnosing criteria from the website with us.
How's your daughter doing? Was the neurologist able to diagnose her? Prayers for you and your family. I know this has got to be very stressful for the both of you.
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Old 01-29-2017, 08:07 PM #15
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The latest update on my daughter...she has regained some blurry sight in her eye. The neuro has ordered the bloodwork for NMO. I was able to locate a neuro-ophthalmologist that accepts her insurance AND is accepting new patients...She will have to travel to the Storm Eye Institute of MUSC in Charleston, SC and has an appt on March 1. Her mother-in-law will take her, I can not make a 3-3 1/2 hour drive without repercussions (sp?) with my own symptoms.
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