Looking for a good CIDP Doctor in CT.

    • Anonymous
      February 24, 2011 at 12:37 pm

      Hi all,
      I’am new here. I’m looking for a CIDP Doctor in Connecticut. I was dx with CIDP in March of 2010. I started getting IVIG for 5hrs a day for 5 days for the first 2 month then 5hrs a day for 5 day after 3 months now I’m getting IVIG one day booster 50g once a month. It seems like I feel good for a couple of weeks then go down hill fast and get new symptoms before the next infusion.When I ask my Dr about my new sysptoms he says they have nothing to do with CIDP. The Dr. I have been seeing is good but I don’t think he is a specialist and I would like to see someone who is.
      Thanks
      Lou

    • Anonymous
      February 24, 2011 at 8:17 pm

      Hi, Lou–

      Contact either Dr. Felice (sp?) or Dr. Charles Whitaker at the Hospital for Special Care in New Britain. I was a pt. of Dr. Whitaker…he and Dr. Felice are specialists in neuro-muscular disorders and run clinics for ALS and MD at the Hospital for Special Care. I was very satisfied wsith the care I received from Dr. Whitaker, who supported me in my pursuit of stem cell therapy. If you want to follow up, PM me and I will dig out the phone number.

      Sharon

    • Anonymous
      February 25, 2011 at 12:11 am

      It sounds like frequency is more important to your treatment than volume.

      While you are searching for another neuro ask your current dr to try giving you 25g every 2 weeks instead of the 50g all at once.

      Make sure you do the math as to how much IVIG you should be getting. The formula is here on the website (just do a search for it).

      My daughter is around 80lbs & should get 35g a month. She’s getting currently 20g every 4 weeks. Her treatments only has 2 hours & 45 minutes so if you get 25g, it shouldn’t be a huge interference in your life.

      Good luck finding a new dr!
      Kelly

    • Anonymous
      February 25, 2011 at 3:22 pm

      Kelly,
      Thanks I’ll talk to my Doc. and check the formula
      Lou

    • Anonymous
      October 11, 2013 at 5:23 pm

      I tried to get an appointment with Dr. Felice and Dr. Whitaker and they told me that I was too complex of a case for their team. Does anyone have any other suggestions?