Be Careful!

March 13, 2010 at 10:51 pm

Hello! Initially I was diagnosed w/GBS. But because it took 3 weeks from tingling in fingers and toes to eventual paralysis, the neuro wasn’t sure if it was GBS or CIDP. (Also, I didn’t need a ventilator and left the hospital after 10 days walking w/a cane.)

I got so frustrated w/recovery and how long it was taking (and that was after only three months – ha!) that when I went back to the neuro, he changed my diagnosis to CIDP, and we began another round of IVIG.

I couldn’t tell if the IVIG was “working.” It certainly didn’t catapult me into better health like it initially did when I was in the hospital. I received IVIG regularly (every 3 months) for the next nine months, Then I realized I was feeling better right before I was to receive my next round of IVIG. (My diagnosis was then changed back to gbs.)

It’s going to be up to you to determine if the additional rounds of IVIG are working. If they help, you have CIDP. If they don’t, you have GBS. It’s as “simple” as that. But it was really hard for me to tell because I so badly wanted something to make me feel better. AND, if you have CIDP, the neuro will continue to see you. If it’s GBS, the neuro can do nothing more, and you’re released back into the world of primary care dr.s (who know even less than the neuro’s!!)

It’s been 2 years now and I still need to be careful w/how much I “push” myself! If I push beyond what my body says is ok, I need to “recover” from pushing myself. If I take realllly good care of myself, I could probably be considered 80% recovered.

Don’t assume that anyone in the medical field knows more than you about your own body!! Treat yourself well (eat right – no sugar, low carbs – rest ALOT, exercise lightly and stop before you’ve exhausted yourself), then see if you’re not progressing.

Best of luck and health to you!!
diagnosed w/GBS, Jan ’08
re-diagnosed w/CIDP, April, ’08
re-re-diagnosed w/GBS, Jan ’09

be careful!!!

October 15, 2007 at 11:50 pm

Please go to and look at the diet recemendations remember that myelin is made up of mostly fat.I for one ,from what Iknow ,wouldtry to include more good fat in my diet (omega3)

be careful

October 31, 2006 at 11:13 am

I take auto immune suppressants…meaning boosting the immune system is off limits, given the fact that the auto immune system is confused, powerful, and is away my nerves.

I took a natural remedy from a health food store which promised to boost my immune system before I was dignosed. Well, it did the trick, but also landed me in the hospital for a week.

Make sure you are know for sure if you are suppose to boost your immue system; that doesn’t sound right to me.

Also, you will get a lot of advice from different loved ones…You would’t belive some of the stuff people have encourged me to do or take (no sugar, vegetarian diet, etc. etc.)

Good luck!