March 5, 2010 at 10:40 am

Hello. I want to give you a bit of a warning. Dr.s were unsure of whether or not I had CIDP or GBS. It took 21 days from onset of tingling in hands and feet to get to the point where I couldn’t walk, so I was in a bit of a grey area. I was in the hosp for 10 days, and received IVIG, although I never needed a respirator. After 6 months of recovery, and frustration that I wasn’t better, I pushed myself harder than I should have (not ridiculously so, just a little!), and then declined, so we all came to the conclusion that I possibly had CIDP, and started IVIG treatments regularly. (And I sooo wanted to feel better!)

It then took three different IVIG treatments (and 9 months) for me to realize that I would start to feel better right BEFORE the next IVIG treatment was scheduled. I’m lucky that I can read my body pretty well (I credit that to being a runner, and I see that you’re a runner as well). But as well as I could read it, recovery and progress was sooooo slow that it seemed incomprehensible to me.

We stopped IVIG treatments, and my recovery has been slow but steady (mind you, a little forward a little backward, but overall, progressing).

I have to listen to my body. If I feel cold, it’s a sign I should rest (or if I feel tingling in my body, or numbness in my toes, or a bit light headed, etc). There are so many ways our bodies tell us to rest. I just had to listen. I had to change my life.

I found that Dr.s could tell me very little about what to expect or what happens after the initial IVIG treatment. My neurologist, (who is on the foundation board AND considered a world expert on GBS), told me he didn’t know what happens after a couple of months of GBS recovery, because he didn’t see any patients after the initial release-from-the-hospital visit. (I cried!) They only continue to see people that they think have CIDP.

I was also in the Dr’s office when he received a call from the pharmeceutical company that provides the IVIG for CIDP patients. They were sending him to a conference in Florida, and lunch in NYC, and “kissing up” like you can’t imagine. (Another time when I was in the office, they had provided a catered lunch for the staff…We’re talking salmon!). I don’t think the Dr. would have prescribed extra IVIG if he really didn’t think that I had CIDP, but that pharmeceutical company was in his face.

What I’m trying to say is that I’ve found that my recovery is in my own hands. (As you can tell, I trust Dr’s very little. They let on like they know more than they do until you ask very pointed questions!)

The only way they can determine whether or not the “grey” cases are CIDP or GBS, is by how the person feels after more IVIG. For me, it was realllly hard to tell because I so badly wanted to feel better. Recovery was so gradual that I honestly could not tell!!!

It will be up to you to determine how the IVIG affects you. I’ve since come to learn that if you don’t feel markedly better after a few days, the IVIG isn’t helping (a tough thing to admit!).

It’s not all doom and gloom! Mind you, many wonderful blessings have come with GBS. Stay open to them! Physically, as long as I take GREAT care of myself, my life is a little different than it used to be. Mentally and emotionally, I am much more at peace with myself and life. Any Bernie Seigel book is wonderful for people trying to heal from any illness!!

Keep at it! You’ll figure it out!
Best Best wishes for a wonderful path!
Two more tips: (1) Not to be contradictory, but when I started to get better (after about one year) and I rested too much, my muscles would ache (not tingle, but ache), and exercise helped (walking, not running). I did try running one day and went so far backwards, it just isn’t worth it to me. Now, after two years, I can down-hill ski, in-line skate, and even cross country ski. But it took me two years to get here (and I still won’t attempt running!). AND, I still need to rest in the middle of every day.

(2) Food has alot to do with how I feel as well. I figured out at one point I was allergic to corn (can you imagine?? Corn is in everything!!! Corn flakes, chips, etc!!), and was then able to give up any pain meds (including ibuprofen). That’s how much that food allergy affected me! I went from 3 – 4 neurontins per day to nothing!! That allergy taxed my system something fierce!
Good luck!

cidp vs gbs

May 11, 2007 at 12:32 am

they are calling it cidp based on the neuro saying gbs does not come back a thir d time. He responded to the ivig in that he got some relief from the symptoms. He is still very weak in his legs. He insists on walking up 2 flights of stairs to sleep in his bed. My fears are he weighs 200 pnds and my mom 130. If he falls he takes himself down and my mother. If he wakes up and cant walk or breathe how will she get him to the hospital?

They are planning on ivig every 4 wks and cellcept. What if it is recurring gbs? the first time it took him longer than 4 but less than 8 wks to plateau.Then stayed thered for months. Sounds like new dx of sidp. 2ng time he fit into the gbs time frame. This time dont know yet since its been 3 wks.but r saying cidp. very confused. Especially abt treatments.

Neuro says he studied under some dr. in maryland who he says is at the forefront and wants my dad to see him. What to do?