Who Has the BEST CIDP Doctor and Where????

    • Anonymous
      July 14, 2008 at 4:15 pm

      Word of mouth is the best way to accomplish lots of things.
      I am looking for an alternate CIDP doctor. I am willing to Fly but Prefer NE USA. Looking for a take action type doctor that is highly skilled with treatment regiment for CIDP. A doctor that does not give up and takes a high level of personal interest in the treatment of their patients.

      Who is your Doctor and why do you like Him or Her?? What hospital affiliation (city and State) Let us know.

      Looks like John Hopkins is highly ranked in neurology. I can drive there, Also Mayo Clinic in Minneapolis is highly ranked.
      Just looking for the names at such centers of excellence.

      thanks, tim

    • Anonymous
      July 14, 2008 at 5:47 pm

      Dr. George Kariampuzha is the best! He’s affiliated with Trinity Mother Frances in Tyler, TX.

      He is extremely intelligent, competent, and has succeeded in getting more done for me in the past few months than any other doctor in the seven years I have been seeking a diagnosis for my neurological problems.

      He tends to constantly run late on his appointments but it’s because he takes all the time he needs with his patients. He doesn’t rush the appointments at all. I really feel he honestly cares about me and what I’m going through.

    • Anonymous
      July 14, 2008 at 6:16 pm


      My neurologist lives far away and I have to travel 17 hours on the greyhound bus to get there!

      The important thing is to get a good doctor locally that will support your neuro.

      My family doctor does all visits etc and when necessary we call the neurologist to double check things.

      Good luck in your search, I am sure with all the help from this site you will find one!

      Rhonda from Canada

    • Anonymous
      July 14, 2008 at 8:50 pm

      My choice of Dr.’s is Dr. Richard Barohn he is on the advisory board with gbs I first meet him in DallasHe was excellent. I believe he is in Kansas City at the University of Kansas Medical center.He speaks at almost all of the symposiums and I was in Atlanta in 2004 he was awesome.
      Good Luck

    • Anonymous
      July 14, 2008 at 10:10 pm

      My doctor William Hwang is in Dallas, Texas. He is fantastic! He runs late quite often, but that is because if he wants to run a test or do something extra, he will do it right then…not schedule another appointment for it like most doctors. It took him a couple of years, but he finally just recently diagnosed me with CIDP. He will keep working with you until he finds an answer.He is actually transferring my care to UT Southwestern Medical Center as of a couple of weeks ago. He said they could do more for me there. But I highly reccommend Dr. Hwang. Hope this helps! -Amy

    • Anonymous
      July 15, 2008 at 7:43 am

      Comcast seems to be down this morning. I was able to read your email but the reply is just stuck in limbo… so here you go, if you end up getting the email just delete it.

      Hi Tim,
      I’m happy to do whatever I can to help! I see Dr. Thien Nguyen at the Johns Hopkins Bay View Medical Center. It took me about 4 weeks from when I first inundated them with paper and requested an appointment until I actually saw someone. First they reviewed all my stuff and as a team met to decide who would be the best fit for my symptoms and disease. Then they contacted me and we set up the appointment. It happens that I got an earlier appointment by going to the Bay View location rather than the main campus so I’ve just stayed there to prevent confusion re: transferring medical records etc. In my case they didn’t really know what was wrong with me so it took a bit of time for them to decide who to go with – in your case you know what’s going on so it may not take so long. I’m not really sure how much it depends on who you get as it seems they work as a team – frequently when I go in for my appointments Dr. Nguyen says he’s met with someone else about me, or they discussed me as a team.
      One other thing to keep in mind, I frequently have to wait 45 minutes for my appointment – however, Dr. Nguyen has never cut me off in an appointment and will often end up spending an entire hour with me answering all our questions. I try to have some patience knowing he is doing the same with his other patients too.
      Good luck and let me know if there is anything else I can do to help out.


    • July 16, 2008 at 3:37 pm

      You may want to consider Dr Carol Koski at U of M medical center In Baltimore. She is on the GBS/CIDP advisory board. I went to her many years ago for a second opinion to confirm my dx. I liked her and she seemed to be on top of things.
      I see Dr William Stuart at the MS Center of Atlanta. He stays up with all of the new treatment protocals and is not affraid to try different things. An example is, he is now trying me on Tysabri, an MS drug, to see if it will produce similar positive results as are being seen in MS patients.

      Good luck in your search.


    • Anonymous
      July 16, 2008 at 9:24 pm

      John T. Kissel, MD at OSU has been my Neurologist for more than 16 yrs and is considered by his peers in the Columbus, OH area as one of the best. I whole hearted agree with this.


    • Anonymous
      July 16, 2008 at 10:44 pm

      I think this is a good idea for a thread and would benefit all of us as we seek answers to our dilemmas. As you say, the best referrals are from others who have used that dr.

      I live in Canada and see a DR. Hader in Saskatoon. He has been doing research on MS for over 30 years and is a leading neuro in our area. He also does a lot of work with GBS and would assume also CIDP but not sure so could check that out.

    • Anonymous
      July 17, 2008 at 10:46 am

      Hi Tim,

      I use Dr. John Berger at SHANDS/University of Florida in Jacksonville, FL. He has done wonders for me and I would highly recommend him.

      Great thread for CIDPers to find doctors that know about how to treat CIDP!

    • Anonymous
      July 19, 2008 at 2:46 pm

      In my opinion a great cidp doctor is one who will try anything (within reason) to get you better. This could be a famous neurologist, or it could be the guy in the next town over. Most doctors will be pretty honest when asked if they have ever treated a cidp patient, and they will also be honest if they would want to. I have had 2 neurologists pass on me altogether due to their inexperience with the disease.

    • Anonymous
      July 20, 2008 at 11:01 am

      I see Dr. Richard Lewis from the Detroit Medical Center. He is on the foundation board. He is very up front and honest about what I can expect and how this disease affects people. I was referred when things kept going downhill with my local neurologists. They tried the “regular” treatments and ran out of options in their bag of tricks. I would recommend him to anyone.

    • Anonymous
      July 20, 2008 at 11:01 am

      [QUOTE=JohnC]In my opinion a great cidp doctor is one who will try anything (within reason) to get you better. This could be a famous neurologist, or it could be the guy in the next town over. Most doctors will be pretty honest when asked if they have ever treated a cidp patient, and they will also be honest if they would want to. I have had 2 neurologists pass on me altogether due to their inexperience with the disease.[/QUOTE]

      I concur, John. The doctor who diagnosed me hadn’t had a great deal of experience with CIDP, but he made his initial diagnosis after 10 minutes of talking with me and testing my lower extremities for sensation (or lack of). After joining this forum, I realized how incredibly fortunate it was for me to pick this doctor. He treated me according to protocol and, when I showed some response to an increased dosage of IVIg, he readily admitted his lack of experience with higher dosages and referred me to another doctor, who he described as “the guy who writes the textbooks on CIDP treatment.”

      The doctor to whom he referred me, by the way, is Dr. Stanley Appel, Chief of Neurology at the Methodist Neurological Institute, at Methodist Hospital in Houston.

    • Anonymous
      July 21, 2008 at 7:54 pm

      Dr. James Teener at U of Michigan is my Neurologist and someone I have referred many others to. I highly recommend him to anyone that asks me.


    • Anonymous
      July 25, 2008 at 6:48 pm

      [FONT=”Comic Sans MS”][SIZE=”3″]Hi Tim,
      I’m in PA as well and my Doc is the best.;)
      Actually he’s part of a team at Lehigh Valley Hospital, Cedar Crest in Allentown.
      Am currently under the care of Yuebing Li M.D., PhD
      and also recommend John Costaldo, M.D. both are well versed in treating CIDP
      Good luck,

    • Anonymous
      July 25, 2008 at 10:42 pm

      I’m hesitant to rate the best… But at times, I sure would like to say who I thought the worst were… Really, I’m thinking there are great neuros in every hospital, in every state.. I think 2 way communication, expectations, and persistance are the key… I have found the so-called best ones, you probably won’t get to see very soon, so you should try to see a local neuro with a referall in mind.. Something I think is very important to, is find a neuro that you can contact, and get answers and/or satisfactory treatment in a timely manner.. I’ve found this to be pretty much the most important thing.. Pretty much now, I deal with a local Nurse Practioner, and I feel she’s the best so far.. Why? CAUSE SHE LISTENS, AND FINDS SOLUTIONS!….Go figure..

      O.K. The best.. One male neuro in St Mary’s Duluth
      One female neuro in St. Mary’s Duluth
      Nurse practioner in St. Mary’s Duluth
      Dr. Parry U Minnesota
      Or probably any board neuro….on this site…

      Hope this doesn’t get me in trouble…deanop:D

    • March 30, 2017 at 12:23 pm

      I’m looking for the best cidp doctor. One who agrees with all the symptoms. Fatigue, pain, balance and weakness.
      One who will understand what I’m going through and understand I can’t possibly work a 40 hr job in my condition.
      Any suggestions would be greatly appreciated.

    • March 30, 2017 at 2:59 pm

      Where are you located? What tests have you had to confirm CIDP? Have you had any treatments? If so, what?

      • March 31, 2017 at 1:09 pm

        I’ve had multiple spinal taps and nerve conduction tests.
        I’ve had ivig, plasmapheresis, imuran, and prednisone.

    • GH
      March 30, 2017 at 6:54 pm

      Kwalte12, any neurolgist should understand that CIDP causes fatigue, pain, weakness, and impaired balance.

    • jk
      April 2, 2017 at 4:49 pm

      An interesting post. You did not satisfactorily answer Jim-LA’s questions. I cannot imagine any doctor who has obligation, or a need, to agree with all your symptoms.

      Further, simply because you cannot work a 40 hour job the doctor has no obligation to agree that you are disabled unless and until you are disabled.

      For a complete understanding of Disability go to:


      In particular Sections 11.14 and 11.00D1 and 11.00D2

      Now for my ‘Any suggestions would be greatly appreciated.” Find a lawyer specializing in Disability, the lawyer might agree to take your case and then send you to the appropriate physician.