How do you pick a Neuro?

    • Anonymous
      June 19, 2007 at 11:45 pm

      I’ve only been diagnosed with CIDP for a couple of months now and am already wondering about changing my neuro dr. My current dr. is very knowledgeable about peripheral nerve diseases; this is his specialty. He works at a teaching hospital but when I am in the hospital for my IVIG treatments I have never seen him; I see several other neuros and loads of interns and residents.

      The problem that I am having is that my dr. doesn’t discuss anything with me. He checks my reflexes and muscle strength, and then writes me a prescription, and then; boom, he’s gone and the visit is over. He does not explain anything; doesn’t tell me why he is switching me to meds from IVIG; nothing. It is a seven hour drive to this hospital and I am very frustrated at the 10-15 min. visit. He does not even ask me about my symptoms; a medical student always comes in and takes my history before I see him.

      This is my question: should I stay with this dr. who apparently knows alot about peripheral nerve disease; or find a new dr. who will spend more time with me and explain to me aspects about this condition? I’ve been told several times that West Virginia University and Ruby Memorial Hospital are known for their neuro dept, but I also have been told of another neuro dr. who treats another CIDP-er from West Virginia (which I met on this message board) which is much closer to home. This CIDPer says that she gets very good care from him.

      This is a tough one for me; any suggestions would be greatly appreciated.


    • June 20, 2007 at 7:51 am

      Shelia. It never hurts to go see another doc. I’m a firm believer that’s it’s my body,I want to know the whys and what fors. You need to be able to talk to them. Maybe just go to the other doc and see how you feel about the treatment you get. Pattie

    • Anonymous
      June 20, 2007 at 8:15 am

      Boy, Sheila – I can appreciate how tough this one is for you! I, too travel a long way to see my neuroligist and know how fast that appointment can go for such a long trip.
      I was diagnosed in my hometown where they see a case of CIDP once every few years, and my pcp as well as my local neuro sent me to a teaching university hospital where they see multiple CIDP patients each week. I travel seven hours each way like you.
      I can only say that one has to go prepared with a list of questions and comments – sometimes mine is a page and a half – and then if I am not satisfied with the depth of an answer or just feel something is missing, I ask him what I am leaving out – and make him think a little bit about what he has said and what he would add to the answers I still feel hazy about. I know this is hard to do when the neuro is a busy guy and gives every indication that you have taken enough time already, but YOU are an important patient, too – and you must be your own advocate.
      I have been seeing this doctor several times a year for 3 years – have come to realize sometimes an emailed question between visits might get a good answer on the spur of the moment.
      Also, never go to appointment alone – the second set of ears and the second “reading” on doctor’s answers, demeanor, patience with you are really helpful in making the decision on whether to stay with this one, or to seek another neuro. If you are dealing with a chronic disease as we are, I think it is absolutely critical to have confidence in your doctor’s regard for you as well as expertise in the field.
      Hope this helps, Bonney

    • Anonymous
      June 20, 2007 at 7:26 pm

      Hello Sheila,
      Compared to your doctor, my doctor was close, only an hour’s drive away, even so, because he knew it was difficult for me to arrange transportation to make office visits, he would allow me to email him with question and he was so good at responding. Is there any chance your doctor would let you email. Also, do you feel okay about just telling your doctor that once in a while you need him to give you the time to ask questions.

    • Anonymous
      June 28, 2007 at 10:49 pm

      I think a neurologist with CIDP experience is the way to go. Otherwise, you’ve got neurologists doing the spaghetti on the wall approach, seeing what sticks.

      I also value the second opinion. CIDP is an illness not easily, defined, treated or dealt with, and it’s therefore tough to imagine one doctor having all the insight and answers.

    • Anonymous
      June 29, 2007 at 4:01 am

      I know this is a difficult decision. I’ve been in your shoes & in my case, the grass was NOT greener on the other side when I switched neuros. Hopefully it goes MUCH better for you.

      If I were you, I would contact the neuro that is closer to you. Go in for a consultation & see if you like her. If you don’t, no harm done. If you do, then you switch. This dr is closer to you, may know more about CIDP specifically & may have more time to spend with you.

      Make sure to take your medical records with you so she can review them. Or you can send them over before the appointment, so she has time to look at them first. You do have copies of all of your records, right? I have a big folder with all of Emi’s stuff in it. It helps TREMENDOUSLY to have it on hand.

      Make sure that you do not cut ties with your old neuro before hand though. You may find that the new neuro just doesn’t fit your personality at all. Having a good relationship with your neuro is very important.

      If you decide to stay with your old neuro or you want to give him another chance, I would suggest that when you go in to his office let him know that you are not happy with the services that you are receiving. Let him know that you NEED explanations & you NEED him to spend more time with you. Do it nicely, of course.

      I actually blocked Emily’s neuro from leaving the room once. I had questions that I wanted to ask for weeks (we were going weekly then) and he would come in & do a quick exam and then out he went. I felt it was my right, as a paying customer, to have my time with him, especially after waiting for 3 hours in the waiting room to see him with a starving, cranky child. Now when we see him, he knows that he has to take his time with us & he can’t rush the appointment.

      I think that some dr’s are so busy & have such a large case load that they forget that they are dealing with REAL people with real issues who need answers from them.

      Good luck.

    • June 29, 2007 at 8:04 pm

      When I was first diagnosed I always took 2 copies of my list of questions. I gave one copy to the nurse who updated my chart so that my doctor would see them before he entered the room. I kept the other copy right in my hand because I am the type of person who forgets important questions until after the doctor leaves the room. (I also have my husband come with me into the exam room so he can hear the answers too. CIDP has turned my brain to mush.)

      I don’t honestly think my doctor deliberated about my questions before he entered my room. But I felt better seeing them attached to the chart. He knew I expected quality answers to specific, well thought out questions.

      If the neurologist is the one who wants changes then it is your right to insist on explanations. There are some people who do not want to be involved in their medical decisions. Perhaps your doctor does not realize that you have educated yourself about CIDP in order to be actively involved.

      I think Kelly’s idea of standing in front of the doorway is an excellent suggestion.

      Good luck,