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Living with Polyneuropathy CIDP, GBS, & CMT

Great CIPD physicians in the Greater Philadelphia (PA) Region ~ Please Help Me Locate :)


#1

Greetings All!

Can anyone recommend any physicians in the Greater Philadelphia/Southern New Jersey area ( or thereabouts) who are experienced with treating CIPD? I know University of PENN is a Center of Excellence, however when I called the Department of Neurology, I couldn't get an appointment with them because I didn't have a referral from another PENN physician. (I have a physician who is more than willing to write a Referral/Letter of Introduction, however they are not associated with PENN.

I was upset by this because I called the GBS-CIPD International Foundation and was given names of two physicians, one from PENN, one from Jefferson who were on the Foundation's List to refer patients to. However, when I called for an appointment, I could not obtain one, as both offices denied being on any such "list".(sigh), It was even more frustrating as I was previously at a seminar discussing CIPD treatments and protocols where physicians were present from Hopkins and PENN where BOTH physicians told everyone present they would be happy to see us (i.e. patients, family members, etc) in their offices if we had any complex questions that couldn't be answered by a phone call, email or medical records review.

Accordingly, I was told I should just go to Hopkins as they have a phenomenal treatment team there. But that is truly cost prohibitive for me, so I was hoping to have success here in the forum finding another specialist locally. From what I have seen in the Discussions I have read so far, everyone is so helpful and supportive of each other...that is fantastic! I am so thrilled to have stumbled onto this page :) I am looking forward to great results!

So, thanking everyone in advance for any information they may be able to share with me that could lead me in the right direction!

May you all experience the joys of this beautiful Holiday season!


#2

I see a Center of Excellence Dr@Penn
I was sewing a Neuro @ Hamamen and just called for second option. Just be sure to ask to see one of the Dr listed im the “excellence” list. I see Dr Bown hedx with a rare form of CIPD! GOOD LUCK! I’ve been trying to get a local Groupon Philly together!


#3

Hi. I live in South Jersey and was curious if you found a Dr in Philadelphia area? If yes would you share their name with me. I’m looking for a good Dr and I can now drive myself.
I hope things are good with you, Regina


#4

Hi Reggienes, have you seen these discussions? They may help you out. Good luck :slight_smile:

CG


#5

Thank you. This is a great help.
Regina