Frustrated With Neurologist

    • Anonymous
      August 11, 2010 at 1:40 pm

      I was diagnosed in April with CIDP and have been treating with a world renowned neurologist — who shall remain nameless. He started me on IVIG and I had a wonderful response. For four months I was literally asymptomatic. In late July I had a terrible flare-up of pain and numbness in my extremities. For nearly two weeks I have been calling and leaving messages, practically begging his assistant to have him call me, all to no avail. I am considering changing neurologists, but finding neurologists who specialize in CIDP in the middle of Pennsylvania is impossible, and I hate to lose such a preeminent doctor. Your thoughts on this predicament would be greatly appreciated.

    • Anonymous
      August 11, 2010 at 1:48 pm

      A doctor is only as good as his office. Do whatever you need to to control the pain. I was always told not to let a specialist be in control of your health. Get your primary doctor involved, mine does all my meds and I can get a hold of him any day of the week. I am on 20 prescripts, including vitamins and minerals

    • Anonymous
      August 11, 2010 at 7:24 pm

      Goodney, did you ever go to the main Foundation page that I told you about?
      If not do so. There is a charter in your area with GBS/CIDP patients that would be of great help to you in locating a neuro.

    • Anonymous
      August 11, 2010 at 10:09 pm

      Pat. Yes, thank you. I found a neurologist at Johns Hopkins in Baltimore. I faxed him my medical records last week and am waiting to hear back as to whether he will take me on as a patient. I hope he does. However, he is not scheduling until November. If he takes me on, I will get on his cancellation list, but it might still take awhile to get in to see him.

    • Anonymous
      August 12, 2010 at 6:17 pm

      My heart & prayers go out to you. Someone said “your doc & med team are one of your first lines of defense in this disease”. They work for you, not the other way around. Can you just go to the E.R.? For me, lyrica works best for this pain.

      Love, smitty

    • Anonymous
      August 24, 2010 at 7:49 pm

      I just go to his office and sit in his waiting room until someone sees me. I have done it twice. I know he is not happy but if no one calls me back and I have a problem I will just go to the ER where he will have to see me anyway.

    • Anonymous
      August 25, 2010 at 12:00 pm

      [QUOTE=Goodney]I was diagnosed in April with CIDP and have been treating with a world renowned neurologist — who shall remain nameless. He started me on IVIG and I had a wonderful response. For four months I was literally asymptomatic. In late July I had a terrible flare-up of pain and numbness in my extremities. For nearly two weeks I have been calling and leaving messages, practically begging his assistant to have him call me, all to no avail. I am considering changing neurologists, but finding neurologists who specialize in CIDP in the middle of Pennsylvania is impossible, and I hate to lose such a preeminent doctor. Your thoughts on this predicament would be greatly appreciated.[/QUOTE]

      Have you looked into immunotherapy such as Rituxen? Gentech developed a treatment that directly targets the antibodies and it is being used for such autoimmune diseases such as MS and CIDP with high anti mag titer. Good luck and don’t give up.

    • Anonymous
      September 5, 2010 at 10:37 pm

      I have found even the best doctors may have no idea of how badly their office is being run. They have hired an office manager but that person may not return calls either. If you decide to leave your current neurologist please let him know why. Write letters to him and the office manager.
      I had to tell my neuro several times his office–appointment desk–office manager–nurses–really was crummy.I couldn’t get an appointment with him–just the PA’s. He was so shocked and said but come by the office any time. He needs to hire competent help–not be in a bubble and have long time patients leave over and over.
      I am sorry no one returned your call. That is awful for you.
      We need to complain.

    • Anonymous
      September 8, 2010 at 9:41 am

      Goodney, My neuro used to teach at John Hopkins and now runs the Neurology Dept at UT Health Science. It took me only two weeks to get in to see him. Hope you get in soon.