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Old 04-02-2013, 07:25 AM #1
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hi i have been in the hospital for 3 weeks now. after having asperation phemonia which led to a crisis. lungs collapsing. they have tried the ivig but only little response so now im on my 3rd plasma exhange due for my 4th wed. after the 3rd i feel a bit weaker its been 12 hours since my 3rd. i was wondering is it normal? i have bad bulbar symptoms cant swallow or talk good. how long does it take to feel the plasma? i really want out of the hospital but till i can swallow there not letting me go. what are your responses to the plasma exchange?

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Old 04-02-2013, 07:30 PM #2
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Wow. Sorry you are having such a hard time. I am not nearly as bad off as you are and I have never needed a plasma exchange. I did talk to a student of mine who's dad had severe myesthenia gravis. He also had several plasma exchanges. He was terribly sick in the hospital for a month; however, he got better and is doing very well now. Hang in there. I hope you feel better soon.
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Old 04-02-2013, 08:35 PM #3
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Sorry to hear you are having such a bad time. Plasmapheresis usually starts working by about the third or fourth treatment I was told. I started feeling better on the third day. Ivig did not do much for me either. Are you on anything else like prednisone?
I found that the prednisone made me worse, but that is me and we are all different. I started back on plasmapheresis yesterday and can tell the difference. It is what keeps me swallowing enough to stay out of the hospital.
Hope something starts working for you soon.
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Old 04-03-2013, 12:07 PM #4
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hi, yes the doctors just started me on predisone i think the day after i was admitted here. 60 mg, it was 2 weeks ago i began predisone. today i have my 4th plasmaphersis. friday is my 5th. i can feel the difference but not so much in my speech and swallowing. throughout this whole year i have had trouble with speaking and swallowing. it was the asperation phemonia that brought me here. litterly killed me 2 times. i was on the incubator for 1 1/2 weeks. an ngo tube in my nose, out for 4 days that i do not remember. my breathing is 100% on my own now. they tried to put a feeding tube in but my stomach is in the wrong spot so if i go that way i need invasive surgury. its been now 4 weeks that i have not eaten on my own. what i need is a good speech therapyst to help me. start off small. they are feeding me through a nose tube still. my throat is swollen slightly they say. for a while they took away mestinon, it helps me swallow and talk and see good. back on it finally, o u need it. lol...i feel like a lab rat here. in bed because they dont want me up on my own. i can walk, wash my hair. only issues left swallowing and speaking. so im praying the 5th plasma will make me whole again. how long before anyone notices a difference?
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Old 04-03-2013, 10:40 PM #5
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I am so sorry you are having such a rough time. I have not had plasmapharesis yet but I expect to start it soon. How long do they expect to keep you in the hospital? Please keep us updated with your improvement.

I will keep you in my prayers
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Old 04-04-2013, 01:27 AM #6
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goodness. soo sorry to hear all youve been going through!!! I don't have experience with that, just IVIG.. but sending positive thoughts your way that the next treatment fixes your swallowing and speech!
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