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Know Your Rights Handbook
April 19, 2012 by NMO mother
Comments (0)
I can't thank the Guthy Jackson Foundation for the informative handbook I received in the mail this week; "Know Your Rights: A Handbook for Patients with Chronic Illness." Hopefully my daughter will not need to use the handbook but if we do we'll be informed. Thank you again Victoria, Bill and the Foundation for looking after us.
Re: [Devics-spectrum] New Member Needs Help
October 19, 2011 by NMO mother
Comments (2)
Dr. Michael Levy is the NMO doctor at Johns Hopkins. He is always at Patient Day in LA....very nice. I email him questions once in awhile.
Chris
> To: [email address removed] From: [email address removed] Date: Wed, 19 Oct 2011 07:43:42 -0700
> Subject: Re: [Devics-spectrum] New Member Needs Help
>
> Yes, my IgG test came back positive. In fact, I had been in PT several in a subacute unit when they call and revised their diagnosis. It took that long for the culture to grow - about a week. Do you know anything about John Hopkins. Coming from Maryland my insurance is more likely to work with Hopkins rather than WVU or any Pittsburgh hospital (although we live closer to Pitt, than Balt.
>
> I appreciate all the time you take to answer me.
>
> _______________________________________________
> Spectrum is the new home of Devic's Support
>
> View posts on Spectrum: http:// spectrum.guthyjacksonfoundation.org/
>
> To change your Spectrum options or unsubscribe to this email list please visit http:// spectrum.guthyjacksonfoundation.org/ pg/ DevicsSupport/ settings
>
> Read Frequently Asked Questions: http:// spectrum.guthyjacksonfoundation.org/ pg/ DevicsSupport/ FAQ/
>
> Questions about this email list can be sent to [email address removed]
Re: [Devics-spectrum] 10/11/2011 Updated NMO Patient Day Attendee List
October 12, 2011 by NMO mother
Comments (2)
Yes I'm flying out of Ohare at 10:35 am on Tuesday. I'm flying United.
Chris Kryshak
Date: Thu, 13 Oct 2011 04:55:32 +0000
From: [email address removed] [email address removed] Re: [Devics-spectrum] 10/11/2011 Updated NMO Patient Day Attendee List
Sue and John Mikalian ~ Granger, IN (flying out of Chicago)
Anyone else flying out of O'hare on Tuesday? Last year I was on the same flight as Chris and never knew it. Let me know!
Sue
From: "Lea Long" [email address removed] [email address removed] Wednesday, October 12, 2011 11:28:30 PM
Subject: Re: [Devics-spectrum] 10/11/2011 Updated NMO Patient Day Attendee List
Lea & James Long - Atlanta, GA
-----Original Message-----
From: Robert Hunter [email address removed] devics-spectrum [email address removed] Wed, Oct 12, 2011 10:59 pm
Subject: Re: [Devics-spectrum] 10/11/2011 Updated NMO Patient Day Attendee List
Thanks, Tracy. Bob and Marlene Hunter, Menlo Park, CASent from my iPad
On Oct 12, 2011, at 1:10 PM, Tracy Owens <
> For those that want to, I'lll put your City, State, and Country on the list
too. Or just the State and Country. I've started with Cherie and Lynne.
>
> Tracy
>
>
Re: [Devics-spectrum] Current List of 2011 NMO Patient Day Attendees
September 9, 2011 by NMO mother Comments (0)
My husband Gary and I are going...Chris and Gary Kryshak.
Date: Fri, 9 Sep 2011 14:51:23 -0500
From: linrosenstiel@gmail.com
To: devics-spectrum@guthyjacksonfoundation.org
Subject: Re: [Devics-spectrum] Current List of 2011 NMO Patient Day Attendees
Yes I am going. Lin Rosenstiel
On Sep 9, 2011 1:26 PM, "Tracy Owens" <tracyowens@cox.net> wrote:
This is a list of those I am currently aware of who are attending the 2011 NMO Patient Day in Los Angeles:
Gracie Mitchell
Stacey Pope
Tracy Owens (me)
Julie Konkel
Shannon Ryan-Chrapko
Kasee Zaerr
Sue Nichols Mikalian
Heather Sowalla
Kristi, Carolyn and Dad Hinckley
Lauren Crowe
Brooke Thomas (Eric and Ireland too?)
Lynne Copeland
Christine Barton
Anita Dudley
Did I miss anyone? Who else is going?
Tracy
_______________________________________________
Spectrum is the new home of Devic's Support
View posts on Spectrum: http:// spectrum.guthyjacksonfoundation.org/
To change your Spectrum options or unsubscribe to this email list please visit http:// spectrum.guthyjacksonfoundation.org/pg/DevicsSupport/settings
Read Frequently Asked Questions: http:// spectrum.guthyjacksonfoundation.org/pg/DevicsSupport/FAQ/
Questions about this email list can be sent to spectrum@guthyjacksonfoundation.org
_______________________________________________ Spectrum is the new home of Devic's Support View posts on Spectrum: http:// spectrum.guthyjacksonfoundation.org/ To change your Spectrum options or unsubscribe to this email list please visit http:/ / spectrum.guthyjacksonfoundation.org/ pg/ DevicsSupport/ settings Read Frequently Asked Questions: http:/ / spectrum.guthyjacksonfoundation.org/ pg/ DevicsSupport/ FAQ/ Questions about this email list can be sent to spectrum@guthyjacksonfoundation.org
Re: [Devics-spectrum] How do you organize your information?
March 29, 2011 by NMO mother Comments (0)
Wow Marlene I am so impressed. Would you send everyone a copy when you're finished? The paperwork is overwhelming...you might want to add a folder on insurance.
CHris
> From: mhunter519@comcast.net
> Date: Tue, 29 Mar 2011 12:50:33 -0700
> To: devics-spectrum@guthyjacksonfoundation.org
> Subject: Re: [Devics-spectrum] How do you organize your information?
>
> Stupid idea? ABSOLUTELY NOT. My husband has his doctorate in Organizational Skills....you make him sound like a piker! Very well presented, Michelle.
> On Mar 29, 2011, at 12:11 PM, cmcmichellem@aol.com wrote:
>
> > Hello everyone. I hope this is okay to post.
> >
> > I'm new to NMO - just diagnosed last month, so I feel like I'm treading water with all of the information I'm reading. Although I'm pretty internet savvy, I enjoy reading articles and other information on paper. I'll write notes in the margins, highlight things, etc.
> >
> > So, I decided to set up a binder system to help me keep track of information I'm collecting. Here are some of the sections I'll put in the binder. What do you think? What would you add or subtract?
> >
> > Dividers/Sections may be (in no particular order):
> >
> > * Physician articles and other researcher articles
> > * Newsletters/pamphlets from Spectrum and other resources - this would also include a list of links to helpful websites, etc.
> > * Words of encouragement or inspiration/prayer for when I'm down and out
> > * My bucket list (I know - that kind of sounds morbid, but I hope you all know what I mean).
> > * My "In Case of Emergency" plan with several copies in a sheet protector. Here I'll be able to pull one out when we go on vacation so I don't have to explain to the ER doctor what NMO is. I hope to have my physician write up a course of action/contact information etc. in case I have an attack and need to go to the ER.
> > * Treatment plan (for everyday maintenance)
> >
> > I'm thinking that may be it. No thought has gone into this - it came to me as I logged into Spectrum.
> >
> > Any suggestions? Do you think this is a stupid idea?
> >
> > Thanks so much,
> > Michelle
> >
> > _______________________________________________
> > Spectrum is the new home of Devic's Support
> >
> > View posts on Spectrum: http:// spectrum.guthyjacksonfoundation.org/
> >
> > To change your Spectrum options or unsubscribe to this email list please visit http:// spectrum.guthyjacksonfoundation.org/ pg/ DevicsSupport/ settings
> >
> > Read Frequently Asked Questions: http:// spectrum.guthyjacksonfoundation.org/ pg/ DevicsSupport/ FAQ/
> >
> > Questions about this email list can be sent to spectrum@guthyjacksonfoundation.org
>
> Laughing is good exercise. It's like jogging on the inside
>
>
>
>
> _______________________________________________
> Spectrum is the new home of Devic's Support
>
> View posts on Spectrum: http:// spectrum.guthyjacksonfoundation.org/
>
> To change your Spectrum options or unsubscribe to this email list please visit http:// spectrum.guthyjacksonfoundation.org/ pg/ DevicsSupport/ settings
>
> Read Frequently Asked Questions: http:// spectrum.guthyjacksonfoundation.org/ pg/ DevicsSupport/ FAQ/
>
> Questions about this email list can be sent to spectrum@guthyjacksonfoundation.org
Re: [Devics-spectrum] NMO Diaries New Footage
March 17, 2011 by NMO mother Comments (0)
Happy St. Patrick's Day back at you three sweet Irish Lassies!
Chris
> To: devics-spectrum@guthyjacksonfoundation.org
> From: eamiller81@gmail.com
> Date: Thu, 17 Mar 2011 07:21:52 -0700
> Subject: [Devics-spectrum] NMO Diaries New Footage
>
> Good Morning Everyone,
>
> Happy St. Patrick's Day, Erin Go Bragh! Just wanted to let all of you know that we have new footage on the website. Please enjoy! Also Please follow NMO Diaries on Facebook and Twitter.
>
> Sincerely,
> Christine, Erin and Jenna
>
> _______________________________________________
> Spectrum is the new home of Devic's Support
>
> View posts on Spectrum: http:// spectrum.guthyjacksonfoundation.org/
>
> To change your Spectrum options or unsubscribe to this email list please visit http:// spectrum.guthyjacksonfoundation.org/ pg/ DevicsSupport/ settings
>
> Read Frequently Asked Questions: http:// spectrum.guthyjacksonfoundation.org/ pg/ DevicsSupport/ FAQ/
>
> Questions about this email list can be sent to spectrum@guthyjacksonfoundation.org
Re: [Devics-spectrum] test from me also
March 16, 2011 by NMO mother Comments (0)
2
Got it.
From: dblackway@allggf.org
To: devics-spectrum@guthyjacksonfoundation.org
Date: Tue, 15 Mar 2011 19:02:02 -0500
Subject: Re: [Devics-spectrum] test from me also
Thank you for your feedback. Your feedback helps us and we are working to ensure that Spectrum emails come through easily for all Spectrum members.
Sincerely,
The Spectrum Team
The Guthy-Jackson Charitable Foundation
From: devics-spectrum-bounces@guthyjacksonfoundation.org [mailto:devics-spectrum-bounces@guthyjacksonfoundation.org] On Behalf Of judholbrook1@aol.com
Sent: Tuesday, March 15, 2011 4:25 PM
To: devics-spectrum@guthyjacksonfoundation.org
Subject: Re: [Devics-spectrum] test from me also
Your now showing up as an attachment. The attachment has 2 different downloads. The 1st one has just your reply to Suzie, the other one has the entire post.
Sent via DROID on Verizon Wireless
-----Original message-----
From: Derek Blackway <dblackway@allggf.org>
To: "devics-spectrum@guthyjacksonfoundation.org" <devics-spectrum@guthyjacksonfoundation.org>
Sent: Tue, Mar 15, 2011 22:35:40 GMT+00:00
Subject: Re: [Devics-spectrum] test from me also
_______________________________________________ Spectrum is the new home of Devic's Support View posts on Spectrum: http:// spectrum.guthyjacksonfoundation.org/ To change your Spectrum options or unsubscribe to this email list please visit http:/ / spectrum.guthyjacksonfoundation.org/ pg/ DevicsSupport/ settings Read Frequently Asked Questions: http:/ / spectrum.guthyjacksonfoundation.org/ pg/ DevicsSupport/ FAQ/ Questions about this email list can be sent to spectrum@guthyjacksonfoundation.org
A Rare Approach to a Rare Disease
