Would Like Suggestions Re: Finding A Neuro

    • Anonymous
      July 27, 2008 at 1:33 pm

      1stly, thanks everyone for your support over the past couple days– i know i am a bit quiet–perhaps due to my current funk– but am glad to be in touch and hear from you all.

      i have a neuro– i guess he is supposed to be good at this stuff– but he is so busy, non-responsive and cavalier– it idn’t that i require hand-holding– but a bit more support/communication would be nice. i’m not convinced he’s not the neuro for me, nor am i convinced he is–

      i would like some suggestions on how to move forward with the doctor question–

      also, my gp is– uninterested, simply.

      i spoke to a woman from a cidp support group who told me that its important that many things occur:

      – that my neuro and gp work together on my care
      – that my neuro is aggressive in stopping the progression of mh illness as to avoid permanent damage
      – etc…

      i live in the san francisco bay area.

      any and all info is welcome. i have some resources and can travel if necessary…

      thanks in advance–

    • July 27, 2008 at 1:51 pm

      Hi Alice,
      If traveling is an option, there is a neuro clinic in Arizona that I believe one of the docs on the board runs, maybe Steinberg? Call the foundation and ask about the pheonix clinic. Yes, some neuro’s do work with the gp. My son personally gets treatment exclusiveley from the neuro. The pediatrician and are gp both referred us to a neuro and I appreciated the admittance that this was above them. I would not say they were uninterested, but unsure. Now that treatment is regular, I suppose our neuro would consult w/our doc, but I just feel more confident w/the neuro as he knows all of the physical clinical observations from the start to now. Good luck!
      Dawn Kevies mom

    • Anonymous
      July 27, 2008 at 4:03 pm

      My GP too stays out of things and lets the neuro handle it. He has to sign off on the Ivig as my neuro is in the city and I get treated by my house, but the neuro coordinates that with the gp.

      sometimes it takes a couple of neuros to get the right one. Just don’t be shy about speaking up for yourself. Thats definitely the one thing i learned here!


    • Anonymous
      July 27, 2008 at 5:33 pm


      sometimes it takes a couple of neuros to get the right one. Just don’t be shy about speaking up for yourself. Thats definitely the one thing i learned here!

      marjie[/QUOTE][FONT=”Comic Sans MS”][SIZE=”2″]Ditto on that,
      before this i never even had a GP, now i have one plus a whole team of neuros and they all share info but the main treatment comes from one Neuro and he takes the time to answer all my questions.
      His biggest asset (at least in my book) is that he encourages me to use the information i glean from this forum.
      Keep looking and asking questions, hope you find one you can relate to.
      Best of luck. [/SIZE][/FONT]

    • Anonymous
      July 28, 2008 at 3:53 pm

      Since you are in a major city, is your neurologist affiliated with the Univ. of California, San Francisco ? Do not settle for anyone less than a professor who also sees patients at a major medical center.

      My son has CIDP. He is 19 years of age and the onset was at age 12.

      We fly from VA to Boston once a year to meet with our neuro. He is at a Harvard affiliated hospital. We have a local neuro. who ‘carries out’ and oversees whatever the Boston md. calls for.

      We see a local internal medicine md. for annual checkups/ bloodtests, etc.

      Hope this helps.


    • Anonymous
      July 28, 2008 at 4:00 pm

      my neuro is with UCSF– i don’t dislike him– but they are so busy there– never return calls, etc…

      i’d like a 2nd opinion re: treatment/progression, etc…

      sorry about your son– how is he now? what treatment(s) is he doing?


    • Anonymous
      July 28, 2008 at 9:58 pm

      and HARD!
      First off, finding out where the good ‘research and teaching’ docs are? Web up ‘US News Top Hospitals’….they just came out with this years listings of top hospitals…go to the neurology specialties listing and once you find a hospital in your area-click it on. You will then get the hospital’s web site. These are often harder to navigate, but they often give short to extensive bios on their various docs.
      You can cross reference with which docs are covered in your insurance plan as preferred providers[saves $?].
      Also do you have some city/regional magazine that does features on ‘top docs’ now and then? In my area they do this about once every 3 years or so and many of my docs are either on the ‘lists’ or in the key practices. I’d found all my docs by referral from my other docs at the time I needed a ‘new’ specialist… and doctor referral [better yet, more than one] can go far in maybe getting your docs to work together. Tho, I try to get mine to do so, it’s like herding cats.
      When I last needed to choose a specialist [3 actually] for a different and more complex issue than CIDP, I called each of my current doctors and asked for ‘names’, then literally ‘webbed the dickens’ out of them! Sometimes, you can get a fuller picture of a doctor by the papers they’ve written or helped research, and thus the philosophies by which they approach the medical issue. Then going deeper, you can find out what charities or places/public service causes they work for and that too can give you a much broader picture of them professionally if not personally. PS don’t be disappointed if you don’t find too many papers? Sometimes a less stellar specialist may be the ‘one’ for you.
      That all in the end is just going to be up to you to trust your own instincts to find a ‘match’. What on all that paper seems ideal may not be one once personalities meet. It’s sometimes a toss of the dice in finding a match, sometimes you CAN just get lucky. I got lucky on both my second and third tries! And I am soo glad I persisted, I got the right diagnosis and have the treatment I need. Nothing is more important than that. Hang in there.