PA Doctor

February 16, 2011 at 6:12 pm

Hi Jason and Barbara,
Is your current Hershey doctor at Hershey Medical Center Neurology department? My brother lives in Hershey and is a Penn med school grad and is friends with many of the doctors at HMC. If Dr. Lowden is not at HMC let me know an I will see who he might suggest.

A second consideration could be a treatment consult with Dr. Carol Koski at the University of Maryland Medical center in Baltimore. She is on the GBS/CIDP board and is a top doc for these diseases. I traveled from Georgia to see her to confirm my diagnosis and proposed treatment options. The 90 minute drive from Hershey to Baltimore might be a good investment if you can get in to see her.
There have been a number of posts about cytoxin and its success for some who were having problems walking. I have been up and down over the years and tried cytoxin when I could barely walk and had success for about a year, then body no longer reacted, so we moved on to other options.

As you will find on this site, everyone responds differently to the various treatments, so you have to have a doctor who understands the disease and is willing to try the various treatments or combination of treatments. To me, risk was not a factor. Having had GBS in ’85 and knowing total paralysis, took the risk factor out of the equation. This is a personal decision that only you can make.

Sometimes one is medication not enough. Every three weeks for the past two years I have been on 100 grams of Gamunex (glycine based ivig), followed the next day with plasmaphersis, 3 liter albumin exchange, and a 500mg iv solumedrol infusion. In addition, I have been on cellcept since ’96. It took this combination to stop my latest flare, but again, this is how my body responded.

Good luck with your doctor search, and let me know if I can try to get you a neuro name at HMC.