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Old 04-21-2012, 01:20 AM #1
meltrey@hotmail.com meltrey@hotmail.com is offline
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meltrey@hotmail.com meltrey@hotmail.com is offline
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Join Date: Apr 2012
Posts: 6
10 yr Member
Default SPS Fear

IVIGs don't work for me. Now entering hospital 8 hrs away for plasma exchange and terrified. Neuro said to expect a 7-10 day hospital stay. Scared, because I'll be there alone. If I can't take it, I think I'll say thanks, but no thanks. My neuro told me to stay off the internet, but I have found so much info useful. I want to learn more about my conditions - SPS, MS, and freakin Lupus. Wish I had been diagnosed with just 1 disease, not a mother whammy all at one time. I know, pity party is over and time to take charge. Wish me luck and courage on this new journey in life
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Old 04-22-2012, 12:02 PM #2
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Rrae Rrae is offline
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Rrae Rrae is offline
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Join Date: Nov 2009
Location: i thought it was in my left pocket
Posts: 4,117
10 yr Member
Smile Hello!

Welcome to NT!

You've come to a great place for support and understanding.
I see you've been finding your way around.

I kinda understand what doc means about staying off the web for the sake of confusing information, but then again, alot of times doctors rush us right thru our appointments and don't give us enuf info. At least here at NT, the information is reliable and well monitored by administration.

It's great to have you!

Rae
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Old 05-06-2012, 03:13 AM #3
meltrey@hotmail.com meltrey@hotmail.com is offline
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meltrey@hotmail.com meltrey@hotmail.com is offline
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Default made it through pladmapherisis

Thanks for your support. My 10 day stay was okay - 2 days in ICU for monitoring and 8 days in reg. room. The worst part was the placement of the catheter in the neck. SPS is so rare, nurses never heard of it. Apparantly my antibodies went on a rebound and are aggressively on the attack. I now have to take new med used for organ transplants. I have great doctors, but I'm just plain tired at this point. My medical bills are no longer manageable. Just reading them causes so much stress. Insurance company actually called me in the hospital as a patient to ask if I was bed ridden. I could feel my muscles, body tighten up with the trigger.Sorry, right now feeling really down
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