Oh Paul I am heartbroken.  If you remember my best friend Cindy passed away last year the same way, and her case was just over 2 years.  If you would ever like to talk, or if I can be of assistance in anyway, please email me and I will provide additional emails/phone numbers, etc.  I truly understand your pain and am moved to tears with this news.


 


Cara


 




 








From: "Paul Aviza" [email address removed] [email address removed] Wednesday, December 7, 2011 10:09:54 AM
Subject: [Devics-spectrum] Susan Aviza











Grace:


 


fyi - thanks for doing a great job over the years, esp picking up after tim


though my wife susan never tested positive for nmo she did have an aggressive case of ms the last 8 yrs


blind poor walking hallucinations swallowing pbms cognition bladder.......


we lost her due to respiratory pbms a few weeks ago and i miss her


 


thanks for helping all 


 


paul


 


ps may have sent earlier one this am to older email


--- On Wed, 12/7/11, [email address removed] [email address removed] wrote:



From: [email address removed] [email address removed] [Devics-spectrum] Mammamia has had a bad relapse.
To: [email address removed] Wednesday, December 7, 2011, 9:00 AM



Hello all,

Just wanted to let you all know that Mammamia has been having a rough time.  She experienced a bad relapse and they are now exploring the need for an alternative treatment, possibly Rituxan.  Please keep her in your thoughts.  She has been a member of Devic's Support almost from the very beginning.

Gracie

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Re: [Devics-spectrum] Just received first 5 day round of IVIG
		
		

		    



	

		
carahill
		
	

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				October 12, 2011				by carahill   
				
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Honey you have every right to cry.  Its not fair at all, and I am so sorry you have to deal with this.  Anyone that deals with a chronic illness is subject to depression over it, so do not feel ashamed or confused by that.  Allow yourself to be sad, but if it ever feels unmanageble or goes on too long...get some meds for that and a professional to talk to.  Totally normal to do so, and in my opinion would be silly not to.  I will pray for you tonight. 

Hugs,
Cara

Sent via MOTOBLUR™ on Verizon Wireless


-----Original message-----



From: Meg Malik [email address removed] Devic's Support [email address removed] Thu, Sep 29, 2011 14:28:18 GMT+00:00
Subject: [Devics-spectrum] Just received first 5 day round of IVIG


Hello all,
I have had numerous problems for the past 10 years and was diagnosed
in Jan 2010 with MS.  Upon seeking another opinion (after no MS
therapies worked) I was told I could have NMO.  I go back on the 7th
of OCt. and expect to be diagnosed and get my treatment plan.  THe
IVIG really helped me with my pain.  Before it was coming through the
methadone.

While I realize all of my blessings for some reason today I am really
struggling emotionally.  I have held it together very well...but feel
like I need to cry all morning today.  Dunno...just felt like reaching
out to those who may understand?

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Re: [Devics-spectrum] Update on Tracy
		
		

		    



	

		
carahill
		
	

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				March 16, 2011				by carahill   
				
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I'm so sorry Tracy.   That's so much to deal with.  I will pray for you.

I'm having trouble reading these on my phone and am a little behind.  Sorry guys...

Cara

Sent via MOTOBLUR™ on Verizon Wireless


-----Original message-----



From: Tracy Owens <tracyowens@cox.net>
To: devics-spectrum@guthyjacksonfoundation.org
Sent: Wed, Mar 16, 2011 05:22:31 GMT+00:00
Subject: [Devics-spectrum] Update on Tracy


I've been relapsing since last Thursday, well realistically from about Tuesday or Wednesday but what with dealing with my Mom's passing and going thru her stuff with my sisters, etc. I just kind of ignored it.  Then I woke up on Thursday and couldn't get out of bed.  I had to call my sister to come help me get out of bed and bring me my cane.  My legs are numb.  The right leg up to my hip, left leg up to my knee.  I have stinging prickling in my legs and burning in my arms.  And this weird shocking feeling down my back and into my arms.  

Stan picked me up in Phoenix on Saturday.  I waited (yes I know how stupid that is but my relapses are usually as bad as some others here) until Monday and left a message for my neuro.  He finally called me back at 4:00 and wanted me to go be evaluated at the ER and they would call the duty neuro (who I do actually happen to like) if necessary and get treatment started.  So we got to the ER around 4:45, got checked in.  Waited and waited.  Got triaged finally about 6:30.  Got back briefly to secondary triage area about 8:30 where I saw a doctor who did an exam, had the nurse draw blood (wanted an IV started but she tried twice and couldn't get a line in), talked about waiting to see if the blood work showed any other reason for the weakness, etc., then he would place a call in to the duty neuro to authorize treatment.  Then we got to go BACK to the waiting room and waited until 10:00 when got called back to the secondary triage room and he said my blood work all looked relatively
 normal and he had talked to the duty neuro and as soon as the steroids came up from the pharmacy I could get my treatment and go home!  Yay!

Then my neuro calls today as I am getting ready to leave for an appointment with a dietitian.  He wants to see me today as a walk in patient!  What!?  Gee that would have been really helpful yesterday and spared me 6 hours at the ER!  I do go see him after the dietitian appointment and he's concerned and scheduling another lumbar puncture, NMO iGg (I've been negative so far), another SSEP, BAER, setting me up to a specialist new to town from New York.  Oh and more physical therapy.  So I'm going to be busy with appointments again for awhile.

Now of course I'm dealing with the steroid fatigue, headache, ringing ears, and just generally crappy feeling that steroids give you.  Waiting for them to start working.

Thanks everyone for your thoughts and prayers.

Tracy

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