just out of the hospital

    • Anonymous
      October 29, 2009 at 10:54 pm

      Hi All: I haven’t posted in a while and see that there are a quite a few new faces. Greetings to my old friends and those new to the forum. About 9 months ago I had acute pericarditis, a swelling of the sac around the heart. It is a fairly rare disease and even more rare to have recurrent pericarditis, so naturally I have that now. The last bout caused swelling around my heart and lungs, fluid on the lungs, high fever, horrible pain and pneumonia, so I spent a week in the hospital. Noone knows what causes recurrent pericarditis, but once you have it twice you are likely to get it again, sometimes over and over. My docs are pretty sure it is related to my immune system and GBS indirectly but it can’t be proven, but it is probably an autoimmune disorder. On top of my disabilities and pain I now have to deal with the uncertainty of getting this disease again and of having to use steroids to control it. But I am getting well again and just wanted to share where I have been with the forum. I hope you old timers will keep posting and we can keep our hands in while welcoming new people as well. Best to all of you and happy halloween. Jeff

    • Anonymous
      October 30, 2009 at 9:12 am

      Hey Jeff,

      Glad to see you’re back and feeling somewhat better. I’m sorry you weren’t away on a nice vacation. ;).

      Take care and be well,


    • Anonymous
      October 30, 2009 at 9:45 am

      Glad you are back.
      Sorry you have been so sick and now have the pericarditis. Hopefully the steroids will keep it under control so the recurrence is not that often.
      Have you noticed any effects from the use of steroids as far as your GBS?
      Keep getting better

    • October 30, 2009 at 11:02 am

      Best wishes on your recovery.
      Dawn Kevies mom

    • Anonymous
      October 30, 2009 at 12:08 pm

      Jeff, I’m glad you are ok.

      hang in there and stay well.


    • Anonymous
      October 30, 2009 at 10:52 pm

      Thanks all for your good wishes. Shirley: I was really curious to see if the steroids would help with my fatigue. The only thing I notice is that I wake up earlier than I used to, but sorry to say no new energy or less fatigue. I know some people are helped with steroids in terms of the fatigue, but nothing for me. Just as well as I would like to get off of them as soon I can safely. Jeff

    • Anonymous
      November 1, 2009 at 3:01 pm

      Glad you’re back and on your way to recovery.
      Yes, there are a LOT of new members here.
      Be well-take care.

      By the way, on a whim of my neuro, he wanted to take a stab,
      at using “speed” to fight the great fatigue I was having, where
      I was almost spending most of my day in bed.
      After some trials with milder stimulants that didn’t work,
      I hit something that DID work.
      I now take Ritalin 20mg when I first get up in the morning,
      then another 20mg around 10-11am, to get me through the
      afternoon. AND IT IS WORKING. Some days it catches up with
      me, and I spend one day in bed. But it is better than spending
      every day mostly in bed.

    • Anonymous
      November 1, 2009 at 6:52 pm

      Hi Ken: Thanks for the info. My pain doctor is dead set against my using steroids to combat fatigue due to side effects. I am glad you get some relief but its not for me. Jeff