Looking for a good Dr. in Pennsylvania

    • Anonymous
      February 14, 2011 at 9:17 am

      Hi we are new on here but not completly new to CIDP. My wife was told she had GB back in 2008 was treated and released from Harrisburg Hospital. Since then it has come back and they change it to CIDP. Ever since we have had problems finding a neuro that has a clue. First we were with Dr. Yanofsky at Harrisburg. All he wanted to do was steroids. Would not help with filing for social security. Said my wife should work eventhough she could not move. (We did win that without the help of doctors) Now we have a Dr. Lowden in Hershey. He is good but will not try anything other that IvIG. He said my wife is to severe for the chemo treatment. But i’ve read where people who were wheelchair bound are now walking with this. My wife uses a cane. It just seems to me that they are treating from a book and don’t really know what they are doing. Also they are hard to get a hold of. If there is a problem you call a nurse and she gets intouch with the dr, then the nurse gets back to you. They have even sent her for tests that she did not need because the message went through to many people. So if anyone knows of a good Dr. that has delt with cidp please let us know we are at our whits end with these Dr’s.

      Thanks

      Jason and Barbara Treaster

    • Anonymous
      February 14, 2011 at 6:10 pm

      Jason:
      Hi, I am in Altoona, Pennsylvania. I was diagnosed with CIDP in April of 2010. I currently am treating with a neurologist in New York City. I know that there is a good neurologist in Pittsburgh who treats CIDP, and the neurologists at Johns Hopkins in Baltimore come highly recommended. My neurologist also has good things to say about the neurologists at the University of Pennsylvania in Philadelphia. I don’t know where you are in PA, but if you can’t get to any of these treaters, you can also consider Geisinger Medical Center in Danville, PA. I know from experience that it is difficult to find a good neurologist in central Pennsylvania. Good luck to you. If I can be of any further help, please let me know. I am always amazed at how many people from Pennsylvania are on this forum.

    • Anonymous
      February 14, 2011 at 11:46 pm

      Consider Dr. Mark Brown at UPenn. He is generally well regarded in peripheral nerve diseases.

    • GAVol
      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.
      Fred

    • Anonymous
      February 17, 2011 at 5:07 pm

      I use Brown at University of PA. Probably Bird or any of them will do well for ya.