-----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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