IVIG is not working, says my neurologist

    • Anonymous
      July 29, 2008 at 1:54 pm

      spoke to my neurologist today– told him that i can no longer walk– he said, “obviously ivig is not working.” i am going to see him soon to consider other treatments…

      nervous, alice

    • Anonymous
      July 29, 2008 at 2:01 pm

      [FONT=”Comic Sans MS”][SIZE=”3″]Alice,
      i hope that ‘soon’ means tomorrow.
      Please don’t let too much time go by, the time to act is now.
      if you have to, get yourself to the ER of your Neurologist’s hospital.
      i don’t mean to frighten you, but this needs attention ASAP.
      Not being able to walk is a[B][I] Big Deal[/I][/B]
      Hoping for good news for you.

    • Anonymous
      July 29, 2008 at 2:17 pm

      yeah, not walking has certain disadvantages…

      it looks like thursday is as soon as i can get in to see the doctor– and the staff hasn’t gotten around to getting further authorization so i “may get stuck with the bill.”



    • Anonymous
      July 29, 2008 at 2:32 pm

      [FONT=”Comic Sans MS”][SIZE=”3″]Alice,
      Let em go ahead and bill you, sort it out later!
      It has sometimes taken 6 months or more to get things sorted out with my expenses, but you can’t wait around, okay?
      Thursday’s not that far away.
      Keep your dukes up!:D

      My Dad always said ‘Do what’s right for yourself today, and worry about tomorrow tomorrow’ Good advice, yeah?
      Take care,

    • Anonymous
      July 29, 2008 at 2:55 pm

      I think I recall that you’ve only had 1 loading dose of IVIG. Is that correct? If so, then you just may need more time & more IVIG. I would not accept that IVIG isn’t working unless you get more & then you see now response.

      Talk to the dr about doing another loading dose of IVIG. Sometimes there are so many bad anti-bodies in a person that they need more to get it under control. Once you get those anti-bodies gone then your body can start to heal.

      You could also talk to your neuro about doing IVIG in conjunction with another immuno-modulator. Although, personally, I’d try the IVIG at least 1 more time.

      Good luck,

      PS, let is know what the dr says.

    • Anonymous
      July 29, 2008 at 3:10 pm

      good luck. at least you know now and your dr. seems attentive.

    • Anonymous
      July 29, 2008 at 4:16 pm

      I agree with others have written. If, your symptoms worsen please go to ER.
      IVIG did not work for me and Plasmaphresis has helped me some. We are going to increase the frequency and hope for a better resonse.
      Know that you are in our thoughts and prayers.take no chance with your health. Go to ER..

    • Anonymous
      July 29, 2008 at 4:31 pm

      if my doc will see me thursday, doesn’t that sound reasonable–

      perhaps i should add that — its not that can all of a sudden not walk– its been slowly progressing…
      i have just seen no improvement since ivig…

      its like i was heading to this point and ivig simply didn’t interfere…

      perhaps i presented to dramatically in my initial post–

      any thoughts?


    • Anonymous
      July 29, 2008 at 5:30 pm

      As long as it was a gradual progression, Thursday sounds reasonable to see your doctor, but I agree with Kelly about the ivig and I think your doctor was expecting quicker results too soon and you really need more ivig. And on the other hand, maybe plasma phoresis might help to wash away all the good AND bad plasma and the meds in the plasma and start fresh and give you a clean slate. For me, the ivig has kept me walking, so I feel it is helping.

    • Anonymous
      July 29, 2008 at 6:51 pm

      Alice, I’d say it took four or five IVIg treatments before I could really tell a difference in my walking. I didn’t notice much at first other than a burst of energy on the third day that lasted a couple of days – then it started kicking in and it’s been pretty consistent since then. If you are rapidly going downhill, as in yesterday that leg worked, today it doesn’t then you certainly need to get seen ASAP. If you are the same, or slightly going downhill then it’s possible that the IVIg has not wiped out the bad antibodies enough yet and you either need more or you need something in conjunction with the IVIg. These are things to talk to the doc about on Thurs but this would be a good time to start keeping a rough journal of how you feel so you can more or less objectively say you are staying the same or going up or down.

      Good luck, hang in there, don’t assume the worst – we have enough surprises in our life not to focus on the “might be’s”. 🙂

    • Anonymous
      July 29, 2008 at 7:02 pm

      I sure hope they can get you much better soon. I truely feel your pain about the not walking good. I am noticing my walking has progressed really bad. This morning my brother in law took me to see my doctor and here he was way up there in front of me walking and I was two hallways behind him struggling to walk. That was so hard to do. I am not getting any treatment yet and am getting frustrated. They are still trying to find the route cause of mine. Hope they figure it out soon. I’m ready for treatment. May you be blessed with a miracle and may something good come out of this for you. Will keep you in my prayers and pray that something does help you soon. Nice meeting you Alice! I am new here!

    • Anonymous
      July 29, 2008 at 8:37 pm

      it’s really appreciated–

      i will see the neuro thursday at 1230! i may have to pay out of pocket and get reimbursed latter–so what–

      i agree oldbat (v), to do what’s right today, etc.

      i’ll discuss options thursday.

      lindah, welcome to you. i know much less than many on this site as i haven’t been here very long either– but i wanted to say just this: route cause may at best remain a “theory” if you have cidp– perhaps you are undergoing the usual round of rule out tests– don’t know. my sense is that a quick and correct diagnosis is most important, followed by a treatment plan.

      i’ve only had this dreadfulness since dec 07 so i am newish too– feel free to contact me if ever you want to talk…

      again– i am so happy to be here with you all and feel a sense of family–bonded together by a resistant cord…


    • Anonymous
      July 31, 2008 at 5:31 am

      good luck at the doc’s office today Alice. Bring up all we talked about and get your questions answered-got your list ready? Let us know how that comes out. Emma

    • Anonymous
      July 31, 2008 at 9:54 am

      Good morning Alice. Just wanted to wish you good luck today. Be sure to stand your ground and speak up for what you need. Take care and let us know how it goes.

    • Anonymous
      July 31, 2008 at 11:48 am

      now i feel myself wondering– what should i advocate for? ugh…

      i realize there is no answer for this–

      i’ll let you know later how it went.


    • Anonymous
      July 31, 2008 at 11:27 pm

      Alice, I was wondering how things went today at your appointment? Hope you received some great news for a change, or at least you have a workable treatment plan. Let us know when you have a chance! 🙂


    • Anonymous
      August 1, 2008 at 5:10 pm

      [FONT=”Comic Sans MS”][SIZE=”3″]Alice,
      Hope it went well with the Neurologist yesterday and that you’ll have good news for us soon.

    • Anonymous
      August 1, 2008 at 5:58 pm

      thanks for your concern and please check my new posts–

      thanks, and hugs, alice