Chicago Area Neurologist Recommendations?
September 8, 2017 at 9:45 pm
I’ve searched the forums and realize this has been asked before but most of the prior posts seem 2-10+ years old and things change. Also many of the older posts were discussing the stem cell transplant trials at the time.
So, for treating CIDP in the Chicago area, either the suburbs or the city itself, whom would you recommend or are you seeing now for treatment?
I realize the university settings are Northwestern, Rush, and U of Chicago, but I’d rather have real patient recommendations with Dr names.
September 8, 2017 at 10:34 pm
Follow the link on this hosting page for the “Centers of Excellence” then click the button for more info. There are specific doctors listed, not just the whole hospital or whole department. There’s also a CIDP group on FB where you might be able to connect with more local folks.
September 8, 2017 at 10:48 pm
Thanks. No centers of excellence in Chicago area in spite of positive Neurology practice reports at Northwestern. I think Mayo was closest CoE last I checked, but nearest options were in MN, KS, OH and TN. Travel is not easy these days.
More info on FB group?
September 8, 2017 at 11:23 pm
I’ve heard some very unhappy CIDP patients (who are getting IVIG at the same infusion center I am) who went to Mayo and felt like they got ripped off with subpar testing. They received no definitive diagnosis and had to keep hunting before they got properly diagnosed. One lady said they did a single point EMG on one leg only, which was inconclusive, and they didn’t see a need to test any further!
See if this link works? If not, just search for CIDP in Facebook. The US group has an image that looks like a partially stripped electrical wire. https://m.facebook.com/groups/2532731679
September 8, 2017 at 11:49 pm
The Foundation’s regional conference is in Chicago (Schaumburg) in two weeks. (9/23). It’s 9-5 and $35. The presenting neuros aren’t local, but you might be able to meet local patients attending the conference. Some will be travelling in like me, but I would think a bulk of the attendees would be local.
And I agree with ARielsstars that the FB pages are great. I belong to 3 closed groups that you have to be accepted into. There are also some public groups. For the close groups, they actually check to make sure you have a legit profile and may ask about your diagnosis. They try to keep spammers out of there.
September 8, 2017 at 11:59 pm
I am signed up for the conference and hope to be able to attend. I heard Dr Allen does (or at least did) partial time at NW but one person I spoke with was unable to get in to see him. Am curious to see how this conference goes but getting more local contacts would be great.
Im not a FB user for multiple reasons, but will take a look at link and do further exploration there.
Hopefully will get some more feedback to the post too.
You must be logged in to reply to this topic.