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Living with Polyneuropathy CIDP, GBS, & CMT

Dr Brannagan at Columbia


#1

Hi all! My neuro recommended I see Dr B in New York. Im making an appointment now. Just wondering what anyone thought or has heard of him.
I cant see him saying anything i havent already been told. Is that a poor attitude to have? Im just at my wits end being told CIDP is so rare, theres no reason for it, no known “cure”.
Im currently having ivig treatments every 5 weeks since 2008.


#2

My suggestion is to go see Dr Burt in Chicago. That is what my dr in ny told me to do. & as far as I can tell his stem cell transplant is a cure. He doesn’t call it a cure. The first or he did it on has been in remission since he did it 8 years ago. Reaserch Dr Richard Burt in Northwestern Hospital in Chicago with CIDP… You will see what I am talking about.

Heather


#3

Heather R - how long did it take you to get an appointment? I know Johns Hopkins is a minimum 3 months out.


#4

Check out David Younger on east 34th street


#5

I think for the most part until more research and results are catalogued no one will ever say there is a cure. I had chelation for 3.5 months and it helped my system so much. It helped me get to a diagnosis. I am most comfortable laying out in the sun with nothing pressing against me. I don’t know if it’s the uv or the chelation but every bit of information I see on the comments gives me a new avenue to explore. Even the different assessments from doctors provides me with their thinking. One of my neurologist assessments was leading her toward possible referral to an oncologist which the levels present the same as autonomic nuerapathy which had already flared 1 year earlier she just was not aware of it.


#6

I tried most therapies known for CIDP. I went for SCT in Nov. of 2011. Although, I still have damage, I have been off all treatments except chronic pain control (most likely permanent damage). It took me about 2-3 weeks after I sent all my medical records in to hear from Paula at NW Hospital. Then, about 2 months before I was scheduled to be evaluated. I hear it takes a little longer now because more people are applying. Best decision for me. I am now back working. Not normal but soooo much better. Strength, fatigue, balance, etc…, better. Mary B.


#7

What is SCT


#8

SCT is Stem Cell Transplant. Dr Burt does the Hematopoetic Stem Cell Transolant where he uses your stem cells to reboot your immune system. Reaserch it. It’s pretty cool.


#9

Thanks for all the great options! Ill check them out.