in the hospital
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September 29, 2009 at 1:00 am
ahh yes paralyzed in the hospital. it like gbs lite. why am I happy? because we caught this damn thing red handed. no more scheduling apttments and then when the appt comes the symptoms are gone. that horrible kidney infection I had this weekend casued this. i knew it was coming cuz everytime i get the bad flare ups i have really bad arthritis type pain right before. anyway i start plama exchange tomorrow. Ill deal with the lupus type symptoms when they come back. one diagnosis doen I think two to go.
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September 29, 2009 at 8:26 am
Tara,
Glad you are finally dx!! Good luck!
Dawn Kevies mom -
September 29, 2009 at 10:19 am
It must be a relief knowing what’s wrong. I hope your suffering is alleviated soon, and I wish you the very best.
Your persistence and strong will will continue to make your life better.
I am saying lots of prayers for you, too. -
September 29, 2009 at 10:25 am
Tara
I am glad you finally got a dx. However, you said “right before a flare up” do you get flare up of GBS cuz if you do its not GBS its CIDP. GBS isn’t reoccuring but CIDP is.
If you don’t get it over and over again then I misunderstood and disregard what I wrote up above.
I am glad you finally got the doctors to see what your going through. It had to be frustrating going and having them not understand your struggle. -
September 29, 2009 at 11:23 am
Tara,
Hope better soon with your treatments.
Good luck and best wishes.
Shirley -
September 29, 2009 at 11:54 am
yes it is cidp. what i have right now is subacute however. i have had one acute, two subacute and two very longg bouts that were very mild. right before my acute and my sub acute episodes I get a bout of arthritis every where complete with swollen joints. this month has been hard because I also have has a bad musculo-scelatal flare up that lasted 3 weeks which I had a possitive ana with. I still have quite a mess to untangle cuz gbs, cidp and rheumatoid arthritis all have had possible connections with lupus. very improbable but it is started to add up. at least I recognize a pattern with my onsets of paralysis and that is arthritis.
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September 29, 2009 at 2:03 pm
get well soon tara…
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September 29, 2009 at 9:49 pm
I’ll be praying for you! Hang in there. I never know what to expect from one day to the next. Today was actually pretty good. Count my blessings.
Ms. Judy -
September 30, 2009 at 1:25 am
Treatment is key. Now that you are in care, focus on getting better.
I have seen people get all worked up over trying to figure out what caused it, why it is there, or whatevers. Now is the time to get better. Treatment = improvement.
Remember those feelings you had prior to your “attack.” They will give you the best clues regarding future events.
Good luck.
Dick S -
September 30, 2009 at 7:39 am
Hi Tara,
Sorry to hear about an unexpected hospital stay. I wish you a speedy
recovery.–tim– -
September 30, 2009 at 10:04 am
the plasma exchange is working. the only paralysis I had was my toes the rest was just weakness but I have movement in my toes now. thanks for all your thoughts and good wishes.
the PE nurse is on the ball and seems to be the common link to us with gbs and cidp. she has another name of some girl who wants to reach out and has taken my name and permission to distribute. she also wrote down all my experiences with this so she can have it for future reference for others. I gave he the name of my neurologist. he is not an expert in cidp he just has experience with it. he better start reading up cuz I think very slowly by word of mouth he is going to find himself in that field whether he likes it or not. people are desperate for a doctor like him. i was thinking that ivig and pe nurses are an excellent source for linking us together in the same towns. there are so many web sights we get fragmented soits good to another source.
the doctor thinks its a lupus/cidp combo as well.
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September 30, 2009 at 10:13 am
Hi Tara,
The waiting for the doctor’s appointments, then when you finally get to see him and the symptoms have died down, is very frustrating.
NOW at least you can get past THAT frustration.
So, this was good in that way, to prove the issue…
But bad that now you are not well.
But now you have documented history of your health, and go forward with a plan of treatments.
I do wish you well, and hope the plasmaphereses will get you out of this acute stage. If not, then they certainly have the other protocol of treatments to try.
Get well, Tara!
KEDASO
(Ken)
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