Best CIDP Doctor

Hi Julia,
For three years I went through various neurologists, once because I moved from San Diego to a north county city of Oceanside, and another time because I felt the neurologist kept saying, “okay-thanks for the update on what’s been happening…now lets see what else will happen”-over and over.
I am currently with a group of neurologists of which I am very pleased with my current neurologist, Dr. Gregory Sahagian. Last year, when they had whittled it down two a couple possibilities, while I was in the hospital for a month, they decided to send me to UCSD, which is a teaching hospital. There, besides being seen by residents in the Neurology program, I was seen by their teacher. After 4 days, I was returned back to my original hospital, with the suggestion of being seen by one of the three top and senior neurologists in the county. One of them was available, and I saw Dr. Geoffrey Sheean, of whom I was very pleased with. He is the Director of multiple departments. He has a great personality, and is very knowledgeable.
He was the one who gave me my final diagnosis back in this past January, and gave further instructions to my current neurologist, who happens to be his past student. Here is the website to read about him:
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I went back to my current guy, as I get along very well with him and his assistant, both in addressing problems, and the treatment process.
I don’t know where you live, but I hope this might help. By the way, because Dr. Sheean is such a busy specialist, he must be referred by a current neurologist, and only after he reviews your charts, does he decide if he will see you or not.
Perhaps, like I did, even if you flew in to see him, dealt with your issues, and had him refer you to the best doctor, in his impression, in your area.
KEDASO

I highly recommend the Peripheral Neuropathy Center at Weill Cornell Medical College in New York City.

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In May 2004, I was at my wit’s end — numbness, tingling, foot drop, arm soreness, etc. Things were getting worse every day, and the neurologists up here could not decide what was wrong with me. I couldn’t even get a follow up appointment for six weeks.

By doing a web search and asking a doctor friend of mine, I found Dr. Russell Chin at the Peripheral Neuropathy Center. He practices with Drs. Latov, Sander and Branagan, all of whom appear repeatedly in the published literature on CIDP. In fact, Dr. Latov is Chair of the Neuropathy Association.

Dr. Chin diagnosed me immediately and got my IVIg regimen started through the visiting nurses association up here. As a result of his quick, decisive diagnosis, I have recovered nearly all of the motor and sensory function that I lost.

In addition, Dr. Chin is a very good communicator, and his staff is very friendly. They have been very accomodating of me since I have to arrange a flight to NYC each time, and I don’t want to pay the rates the airlines charge for short notice trips.

You are doing the right thing in trying to find the best doctor out there. Best of luck with your search.

Brian Sullivan
Burlington, VT

Hi Julia,

You could try Dr. Albert Tahmoush 609-599-5792
St. Francis Hospital
Trenton, NJ

He also has an office in Philadelphia. He specializes in CIDP, he’s a Neuro-Muscular Dr.

Wishing you the best.

You know what, after reading all the responses it occured to me that the best cidp doctor is one that not only genuinely cares about the patient but one that will do whatever it takes to help the patient get well without ego or protocal getting in the way. There are not that many different treatments for cidp, and finding one that works for some of us takes some trying. As long as you feel your doctor is doing everything they can to help, then you have a great doc.

I wouldnt so much go looking for the top neuro in the world, but rather one who will listen to me. Trust me, with the information you can glean from this site you will know more than most every m.d. and almost every neurologist. If I had never found this site, then I would have never heard of Doc David and Rituxan. My neuro and I agreed we had nothing to lose, so he fought to get me approved for it on anecdotal evidence.

Anyhow, educate yourself so you know when you are being led down the right or wrong path. Then your choice of doctors becomes less important.

Hi Julia,
You can keep your doctor and then just see one “that’s tops in CIDP” for consultation once or twice a year. And I think good doctors would agree to talk to each other.

Julia,

I notice that you are from Pennsylvania but I don’t know how far you are from NYC but after struggling several years ago with cipd symptoms and several neurologists who were less than caring and somewhat clueless I was fortunate to find Dr. Howard Sander.

I must echo Brian’s sentiments:

[I][B]I highly recommend the Peripheral Neuropathy Center at Weill Cornell Medical College in New York City.

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Dr. Sander is one of the physicians in this office and it is because of his care, attention and brilliance that I am able to function. All of the physicians in this office are top-rate and the support staff is caring, kind and knowledgable. I’m there at least once every two weeks – for ivig – and it’s almost become like a second home!

If it’s realistic for you to come into NYC you might consider this office.

Best,

Brad

Julia,
I too was seen by Dr. Chin at Cornell. I had a great neurologist in NJ who diagnosed me on the first visit, did all the tests and even got my insurance co. to approve IViG. She told me to go to Cornell in NYC because they are tops, even though she knew they would confirm her diagnosis.
Dr. Chin spends all the time you need to understand tests, results, prognosis, etc… I always left knowing and understanding more.
When I moved to Virginia,the docs at Cornell gave me a name at UVa to see and that has worked out well.
Good luck.

Julie,
If you are willing to travel some, I highly recommend my doctor here in Minneapolis, Minnesota at the University of Minnesota Neurology Clinic. His name is Dr. Gareth Parry and you may note that he is on the list of doctors on the publications that are sent out from the gbs/cidp newsletter. I was diagnosed on my first visit and have been treated with high doses of steroids and I am immensely improved. Physically, I am able to walk and get up from chairs and bathe myself. Not a lot of stamina but I struggle with weight so that could be clouding my strength awareness. Just google the name Gareth Parry and one of the sites will be right.
Jan
Good Luck to you

The top docs in Boston are Anthony Amato at Brigham and Womens hospital and Alan Ropper and Ken Gorson at St Elizabeths. All three are highly published in the field and their knowledge is breathtaking. Ropper is hard to get an appointment with as he has become well know for his treatment of celebrities (as well as his status as one of the top Neurologists in the world). I have been fortunate that my neurologist feels comfortable with (atually encourages) my seeing them once or twice a year for consults on treatments. Best of luck.

Anthony Amato
Neurologist
Brigham and Womans Hospital
75 Francis Street
Boston, MA 02115
617-732-8046

Kenneth Gorson
Neurologist
Caritas St. Elizabeth’s Medical Center
736 Cambridge St, Neurology Department – SJ 4
Boston, MA 02135
617-789-2375

Allan Ropper
Neurologist
Caritas St. Elizabeth’s Medical Center
736 Cambridge St, Neurology Department – SJ 4
Boston, MA 02135
617-789-3300

tim