i was diagnosed with GBS on may 28 and went thru a 5 day treatment if IVIG. and felt alot better . how ever 3 week after i got the dreaded pins and needles feeling again and lost most of my strenght again. and now the docs tell my thats its CIPD. and have now gone thru another 5 day treatment of IGIV again ending july11. im feeling better except still somewhat weak and numbness in my toes. its now August 8. i was in to see my neuro last tuesday went thru another nerve conduction test. they are now starting me on a two week regime of ivig starting on august 16. alltho i was in today for a treatment of ivig 50g to try to keep my strength up so i can make it to august 16. they also started me on prendezone 50mg daily.

Ive been reading alot of the posts here since mid june and its been helpful for sure in answering alot of my questions. there is a great bunch of people here. and i hope in time i’ll be of some help to others on this road of CIPD hell.
take care all for now

Roland

Hello Meg,
I hope he doesn’t object but he might not read through your post. If you want to meet someone in your area, contact member Jim C. He is from Florida panhandle. Read through The Lighter Side and you’ll find a thread Jim started. Just click his name.

Hi Tom –
Glad to read something regarding exercise with GBS. I was diagnosed Sept. 15, 2009. Plasmapharesis 5 times over 7 days I believe stopped the progression. 10 days in ICU and 10 days in rehab, I’m doing much better. I have more good days than bad;-) I am anxious to start back on my treadmill, but was told by a neurologist that over doing it would cause permanent nerve damage. Scary!!!

Any additional ideas or feedback on the topic would be greatly appreciated.

Thanks in advance,
mj909

Khane is 6 1/2 months
Nov-2006 he was diagnosed
pnemonia(sp)
we live in Iowa

Hello,
We are waiting to welcome you to your new family, where we feel what you feel. I am going to presume that you will register as Nancy G, checked the members earlier and don’t see you yet.

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Hello Crystal,
I have to agree with what Jerimy said. If your husband has not been treated with IVIG infusions or PP plasma pheresis, I think you should get another neurologist. Find one who is familiar with GBS/CIDP. If you would tell us where you are from, we may have a member in your area and we’ll try to give you a recommendation of a good neurologist.

Hello Cindy,
And welcome to your new family, where we feel what you feel. We are here for all sorts of purposes, even to play fun games, cry and vent our frustrations.

PP’s and IVIG’s don’t always bring about improvements and an increase in strength, another very important purpose is to try to just control the progression of this syndrome. If the progression can be controlled, myelin can re-generate and we can heal.

That’s what happened to me. I am healing and my outlook to walk again is good.