IVIG is not working, says my neurologist

[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.
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[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
[IMG]http://i253.photobucket.com/albums/hh47/oldbat2ccats/Kitten-vs-Butterfly.gif[/IMG]

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

PS, let is know what the dr says.

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

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..

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.
Emma

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”. 🙂

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!

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

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.

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! 🙂

Mags

[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.
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