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Living with Polyneuropathy CIDP, GBS, & CMT

7 Centers of Excellence for CIDP/GBS in the World


#1

I would encourage anyone to check these centers out (by searching) and see if one is close enough to travel to for them. These drs are top notch.

I won't mention which one I go to, but it was certainly a life saver, so to speak. I get the best care available, I believe.


#2

I did contact one of the centers and they have requested a copy of all past records and treatments. Once they review, they said they would make a decision on if they would take my case or not. I am hoping to get a package out within the next week. I am glad to see positive feedback on them. I have been with my current doctor since 2008, just finished 2 years IVIG with steriods (2x a week) with no results (I did have some adverse reactions). So I am hoping this may be the answer! Thanks for the post.


#3

what are these centers of excellence for CIDP? I can't seem to find them & personally have not encountered one...with quite a bit of searching. thanks


#4

You can go to the website www.gbs-cidp.org and right on the front page now is Centers for Excellence. I was surprised when I just went to double check before sending this info - that they are now up to 12 - of which I believe 9 are here in the US. Good Luck!


#5

I have an appt Monday at the University of Penn center of excellence!!!!!!!!!!!!!!!!!!!!!!!!!!!!

SOOOOOOOOOOOOOOOOOO EXCITED!!

Original appt was for April, I kept calling then got in for Dec, got a call Friday afternoon for a first thing Monday appt!!

I have ALL my past medical info and my Immunologist,Hemo/Onco are both at Penn, so they can all kep tabs on my HOPEFUL progress.

So...my question is.............What do I ask?? I have all the basic questions I think. Ive had CIDP since Nov 2010, very mild slow onset that stayed same til June 2012. Forearms and lower legs went numb out of the blue. Started IVIG in Aug...honestly dont see any improvement. I also have autoimmune deficency...low IGG & IGA.

If anyone has helpful ideas for me as far as questions to ask or other treatments etc.....PLEASE PLEASE COMMENT AWAY~~

Thank you...I hoe YOU feel better :)


#6

Actually there are 10-12 centers of Excellence in the world. One of them is in Detroit, MI. At the Detroit Medical Center.

This is a link the CIDP Foundation International.

http://www.gbs-cidp.org/


#7

I had a doctor at the DMC (also a center of excellence). I was in a wheelchair when I started seeing this doctor in June 2011. I just finished my first 5k walk in August 2013. No, no wheelchair, no walker, no cane. I just walked. I agree, the doctors are top notch.


#8

I am in the process of getting a referral to the center in Boston


#9

Good, the centers of excellence have wonderful doctors.

tapcod said:

I am in the process of getting a referral to the center in Boston


#10

I see the comments posted, but I don't see the 7 center of excellence. Where can I see the original article? I would like to read about where these centers are.


#11

Thanks for the direction. I found the article. Unfortunately I am already going to one of the centers of Excellence, but I am not happy with the attention I am getting.



mdolich said:

It's on the GBS/CIDP Foundation International website. just scroll down and it's on the right hand side of the page. here's the link:

www.gbs-cidp.org

This link will take you directly to where the list is;

http://www.gbs-cidp.org/get-support/centers-of-excellence/

bcooper601 said:

I see the comments posted, but I don't see the 7 center of excellence. Where can I see the original article? I would like to read about where these centers are.


#12

I was not diagnosed properly in Santa Fe, NM where I live. My primary care doctor suggested I find another city with better hospitals. Originally from Dallas, I contacted UT Southwestern Medical Center. I contacted them and there was a three month wait to be seen. Due to the fact paralysis had set in below my waist and was moving to my arms, I caught a flight the next day and went to the emergency room at UTSWMC. They immediately diagnosed, admitted me and started treatment the same day. That was 2/26/2015. I was released 4/7/2015 flew back to Santa Fe where I am getting Physical Therapy and IVIG treatments. I am walking completely without a walker, cane or wheelchair. They understand this condition and treated it aggressively with Plasma Exchange (7) - IVIG treatments (5) and steroids. I trust them completely.


#13

Has anyone been to California Pacific Medical Center in San Francisco for a diagnosis


#14

Newly diagnosed - been ill since 2001- recetly am rapidly losing muscle strength and sensation in feet, legs and hands and absolutely exhausted. My doc is trying to get me in to Vanderbilt, Ohio or Virginia. Any recommendations on who is good and who is NOT?


#15

Is there a Center for CIDP in the Philippines? Hopfully near South of Luzon. Searching online… None to find though not sure for a specific. Damn why my Disease is so Rare. My self can’t expain this… :frowning: Thanks!