MD update, Beth

    • Anonymous
      April 7, 2008 at 12:53 pm

      MD and I both have seen some improvement since fifth treatment of Plasmaphresis. Not as much as I had hoped for, but some. stated I could continue to improve over the next few days or weeks.
      MD stated, “we now wait until I have a relapse. At that point we can schedule phresis and may know what schedule I will be on. He will then determine after the next phresis treatments on placement of a perm. cath.
      My nerves are in bad shape and he is using the word severe Anti-Mag with CIDP presentation. I’m not sure what if any difference there is than the old CIDP dx. however, MD states treatment is the same.
      I am slowly reducing the amount of Prednisone and he will determine at next visit if he will start reducing the amount of CellCept.
      He continues to say, I will not know where I will end up physically until almost a year from now. Is that true for some of you.
      Question, what type of perm double lumen cath does some of you have? Where is it placed? And what trouble have you had? Do you flush each day with heparin?
      Sorry this is so long. Thanks a head of time. It has only taken me six months to come to some resolution of this diagnosis.

    • Anonymous
      April 7, 2008 at 4:38 pm

      [FONT=”Comic Sans MS”][SIZE=”2″]Beth,
      Glad to hear you are finally seeing some improvement, but am a bit wary of your MD’S statement ‘Now we wait to see if you have a relapse’:confused:

      Am not certain what type of catheter mine is, but it is located on my chest just above my right breast. Took a bit of getting used to having those two tubes hanging out up there, but it’s been six months and haven’t had any problems at all with it.
      Once a week i go to the dialysis center to have it flushed (with saline), do any blood draws that are necessary, then it’s refilled with heparin to prevent clots, and the dressing is changed. You have to avoid getting it wet, so for myself it means washing my hair in the kitchen sink, and having a bath for the rest.
      If it looks as if you’ll need long term maintenance with PP, you might want to discuss a fistula with your MD.
      Good luck and keep the faith:D
      OB[/SIZE][/FONT]

    • Anonymous
      April 7, 2008 at 4:45 pm

      [FONT=”Comic Sans MS”][SIZE=”2″]Beth,
      Check out this thread

      [url]http://www.gbs-cidp.org/forums/showthread.php?t=3717&page=2&highlight=plasmapheresis[/url]

      Particularly the post by MARKENS[/SIZE][/FONT]

    • Dawn Kevies mom
      April 7, 2008 at 7:41 pm

      Hi Beth,
      glad to hear things are looking up and you now have a treatment that works. Now the hard part of figuring out a plan. Now at least there will be a plan!!! GREAT NEWS!
      Dawn Kevies mom

MD update, Beth

    • Anonymous
      February 1, 2008 at 6:29 am

      Consultant said it takes up to six months on IVIG and CellCept and
      Prednisone to know if it will work. Also, sending me for x-rays to
      make sure i have no growth on the spine.
      So, he upped my Prednisone to 80 mg a day, keep the CellCept at
      2000mg a day and continue with monthly IVIG.
      Continue with PT 3 times a week.
      He does not want to do Plasma Pheresis unless it is a last resort.
      Says too many risks and it is short term acting and he wants to find
      a long term solution.
      This is one of best Neuro groups in our area, so will hang in there
      for a while.
      Thanks again to all of you. Not sure what I would do without this
      group.
      🙁