Looking for new Dr

    • Anonymous
      November 3, 2011 at 8:57 am

      Hi All,
      it is Mom2Heather here… we are having a rough go with the new Dr. (he thinks he is god) to bring you up to speed. 9/09 my daughter was diagnosed with cidp, received IVIG for 2 years, we believed she was in remission so we stopped treatment, 10 weeks later the tingling returned. We went back to IVIG, but she came down with the rare side effect of Aseptic Meningitis so they wanted us to switch treatments.

      We started Apherisis treatments, but the Dr. will not talk with us and answer technical questions, My daughter is a Bio Med major and is studying a lot about her nervous system and the apherisis process, so she is not ignorant to her disease or the treatments, however she is treated as such.. We are continuing with this Dr. but we are interviewing new ones as well. we live in Central Mass. and will travel to get necessary treatments or Dr. visits. Anyone out there sort of near us who LOVES their doc and program?

    • Anonymous
      November 3, 2011 at 10:21 am

      Some doctors do have a ‘God-complex’.
      I console myself with the fact that they’ll stand corrected on the day of judgment.
      I sincerely wish you well in finding good medical help.

    • Anonymous
      November 4, 2011 at 4:36 pm

      I was DX’d with GBS in 2006 and then re-DX’d with CIDP when I relapsed that same year. Thanks to a combo of steroids and immunosuppressants I was in remission for 5 years. In early Oct ’11 I felt a relapse coming on and was started on IVIG. I too got aseptic meningitis from the IVIG. Just because you get aseptic meningitis doesn’t mean you can’t do IVIG again. Three weeks after the relapse started my weakness symptoms got worse and I was started on another series of IVIG treatments. They used the same brand, but ran it at a slower rate this time. I made it through the treatments without getting the aseptic meningitis again and the IVIG has definitely helped. Just my 2 cents.

    • Anonymous
      November 4, 2011 at 10:34 pm

      Lianne99,

      I have great respect for my neurologist, but that won’t do you any good as he is in California. However, Dr. Kenneth Gorson practices at St. Elizabeth’s in Boston. He is a recognized authority on CIDP. I have spoken with him at a conference and he seemed to be quite approachable and sympathetic. Perhaps he would be a good choice for you to consider.

      ~MarkEns

    • Anonymous
      November 5, 2011 at 1:01 pm

      Hi Mark… Thank you, we have an Appt. to speak with him. I also have an appt. with Dr. Bella to speak with him… I do hope that all this talking results in fruitfull results. I do want to make it to the next national conference and My daughter does as well…

      JCron, I agree with your .02, however this Dr. is not allowing this to recurr.. thus a new Dr. is in order.

      We are doing a lot of research and phone calling and recently had a great conversation with a pulmonologist… very insightful…

      THank you Thank you

looking for new Dr

    • Anonymous
      August 5, 2009 at 10:38 pm

      hello
      I havent posted in a while but i read the forums all the time.

      I live in West Virginia right now and have the best Nuro Dr. but my husband and i are moving back to New Jersey, where we are from.

      Dose any one know of a good Nuro Dr in central jersey?

    • Anonymous
      August 6, 2009 at 10:57 am

      Hi Diane,
      If you will be anywhere near Summit, New Jersey, I can recommend someone that I consider a really great neurologist. He used to be my neuro when I lived in New York, then he moved to New Jersey. His name is Dr. John Halperin and he is at Overlook Hospital AtlanticHealth. Google hospital, you might find some info.

    • Anonymous
      August 6, 2009 at 4:25 pm

      liz,

      thank you, i will definatally look him up. it is so hard to find a dr who really knows what is going with us!!!!

    • Anonymous
      August 22, 2009 at 9:37 am

      Diane,
      I know of Dr. Halperin from when I was practicing law on LI and reprepresenting doctors and he is an execellent neurologist.
      I moved to NJ and the doctor that diagnosed me and was phenomenol in getting me treatment (She fought with the insurance company herself and called out the doctor who didn’t want to approve IViG) and also referred me to Cornell. Great staff as well.
      She is Susan Lage and works at Central Jersey Neurology in Freehold.
      Good luck.