Appeal for info

I think that’s been covered quite well. Johns-Hopkins University Medical Center in the East. The Mayo Clinic in the midwest. Perhaps the Oregon Health Sciences University since they’re in the midst of trials on ALA for neuropathies. Northwestern University is doing stem cell transplant.

Check the CIDP forum on Facebook. A young man there is undergoing stem replacement in Toronto.

🙂 Yikes! That is a hard question! There are so many neurologist in the world, but so few that specialize or know anything about CIDP. I personally went to see the “CIDP Guru”, Dr. Ram Ayyar, at the University of Miami (Florida) and he told me it was axonal neuropathy, but that he didn’t think treatment was justified at the time. That happened in 2007 and 2008. I went to see my new neurologist, Dr. Resnick, who studied under Dr. Ayyar and said he completely disagreed with Dr. Ayyar and thanks to Dr. Resnick, I started IVIG last Monday. I am happy to say that today, 1 full week after my last treatment, I see a light at the end of the tunnel. I actually am feeling better. Maybe it was my experience with Dr. Ayyar personally. He is well respected and has performed and published many CIDP studies along with his practice partners. One of them is named Dr. Sharma. I have heard wonderful things about him! One thing I like about Dr. Ayyar and Dr. Resnick is that they perform their own nerve conduction studies and EMG’s. For some reason, many neuro’s have told me that a dr. performing these themselves instead of techs can make a world of a difference because they each have their own method of testing that they understand. They know what nerves to look at and test based on your history and not a textbook. Don’t get me wrong, I love the techs and even have found that some have been more knowledgable/compitant than most of my past neuro’s, but I have noticed a difference in the involvement of the testing. Here are a few links on the U.M group and their studies:

[url]http://www.neuropathy.org/site/DocServer/Clues_to_the_Diagnosis_of_Immune_Mediated_Neuropathies.pdf?docID=944[/url]

[url]http://www.springerlink.com/content/57445q63h1848221/[/url]

[url]http://www.ratemds.com/doctor-ratings/154029/FL/Miami/Ayyar[/url]

[url]http://neurology.med.miami.edu/x210.xml[/url]

[url]http://linkinghub.elsevier.com/retrieve/pii/S0022510X06005855[/url]

Dr. Steven Resnick is the one who ultimately diagnosed me. He is a young doctor (D.O) and practices out of Mount Sinai hospital in Miami Beach. I haven’t been able to pull up any info on any of his CIDP studies. I am not sure if he has published any?????? He is a great doctor who did think “outside the box” and go against what everyone else said. I can’t seem to find his card on me, but I am seeing him on Tuesday and can get it for you. let me know. I hoipe this was of some help to you.

I have been very pleased with Dr. Lopate at Washington University in St. Louis, he has done a wonderful job with me.

I assume you are in the UK, I think Dr. David Cornblath is in the UK. He is on the board I believe. In any event you could call or e-mail the foundation and they could hook you up. He is well published in gbs/cidp. He was at the symposium in Illinois last year. There is another symposium this Nov in Pa.
Good luck, maybe somneone else on the site will remember where he is and give you more info.
Dawn Kevies mom

Dr. Cornblath is at Johns-Hopkins.

[QUOTE=ukguytemp]thanks Rocky

I meant it more in terms of named drs, actually.[/QUOTE]

[I]Actually, what I was giving you were sites where it is known there are doctors on staff who are extremely well-versed in GBS and CIDP. There are other medical sites, of course, but I would start there rather than randomly taking specific suggestions.[/I]

[QUOTE=ukguytemp]hi Florencia

I have axonal neuropathy too so, as far as I know not demyelinating.

What made the second dr think you had CIDP? was it another nerve conduction test?

john[/QUOTE]

Hi John,
Yes, it was an another NCV and EMG’s. My test show it is axonal in some nerves, but that it is demylinating in other nerves. That was why he started IVIG treatment. He said that the damage done to the nerves cannot be reversed but that the IVIG can stop or slow any further demylination on healthier nerves in order to avoid the disease reaching the axon. Ask your doctor if your Nerve Conduction’s meet axonal neuropathy on all tested nerves. If there is a chance that some are still in a demylinating stage, you could save the axon! Insist that ALL nerves are tested. I did my first dose of IVIG that was a week long last Monday and started feeling better yesterday.
I hope this helps you and gives you a little hope that there is a chance of stopping further damage. If your doctor does not want to retest, find another who will. If you have current tests (within the last 6 months), make a follow up visit with your doctor to have him/her look at your testing with a more critical eye and not assume all nerves have been affected at the axon. Even if there are a few nerves that can be saved, they are worth saving!!!!!
Best of luck,

Hi John,
I have sent two people from this site to my neuro.
His name is Dr. Gregory Sahagian.
He works in an office with a team of about 10 neuros, each specializing in a different neuro problem.
They have their own website, if you wanted to see about them,
at: [url]www.neurocenter.com[/url]
Dr. Sahagian is a neuro-muscular specialist, and has multiple CIDP patients, though he tells me I am his worst CIDP patient.
He is head of Neurology at Tri-City Medical Center in Oceanside, California, and also works at Scripps-Encinitas Hospital.
This group is very advanced, as they often have and do their own trials on drugs and treatments.

I have been with him for a few years. I took going through 4 different neuros, before I got him and trust him completely. In the USA, often patients are limited to a 15 minute office visit with their doctor. With my neuro, sometimes I have been with him for over an hour discussing things.
And last Tuesday, I was supposed to have an important appointment with him, that in the morning, I had to cancel. So, instead, he called me at home to discuss my new plan of a change of chemotherapy drugs. He is a doctor who listens.

There is also a top neuro in this county that I have seen, that my health insurance won’t let me see because he is “out of network”. He is the one who gave me my final diagnosis. But, you have to send him info and records first, before he decides whether he will see you or not, as he only deals with rare neuro diseases.
His name is Dr. Geoffrey Sheean, an Austalian, at U.C.S.D./Thornton Hospital.

Hope this helps in what you’re looking for.
Ken
(KEDASO)

[QUOTE=ukguytemp]thanks mark

I spoke to john hopkins but the tests there are 10 times the cost in the UK. literally 10 times[/QUOTE]

Healthcare in the U.S. is the most expensive in the world! That does not mean it is any better. It is obsured and saddenning all at once. I know that at the Mayo Clinic, they allow you to bring your own test with you. At least my friend was able to arrange that when scheduling her appointment for her MS diagnosis. She was able to take her own MRI’s and CAT Scans to the neurologist because her insurance would not cover any testing at the Mayo Clinic or any of the visit since she was traveling out of state. It saved her over $8,000! She did have pay the doctors consultation fee which was $500 or so. Not many doctors are happy about reading other physicians work, but once you explain that you are a cash patient, they are more open to it.
Good luck!

Dear Kedaso,

I too have an appointment with Dr. Sahagian! I’ll be seeing him in March.
I called last month and was told he would be out of the office a lot in
Jan and Feb. I am really eager to see him. I have a Doctor in LA that says
I have CIDP and another who says I don’t! I am hoping he can tell me for
sure.

Bye the way, neither of these docs know what to do with me. I tried IVIG
for well over a year and got 0 results. I also tried Orencia, Solumederol,
etc. Nothing has stopped the progression of this thing. I continue to feel
terrible every day.

Are you doing Cytoxin? I have been researching it a great deal. It is used
frequently in other countries. It also seems to have a high success rate.
There have been postings about it on this forum. I am very intrigued by it.
I would love us to be in remission instead of doing a lifetime of IVIG!

Please let me know how it goes for you. I wish you good luck!

Sandila

My son who has CIDP see’s 2 neuros but the one who calls all the shots is Dr. Richard Lewis at Wayne State University in Michigan. He specializes in CIDP and ALS. He is on the board of this foundation and is published. He has also named a variant of CIDP the Lewis-Sumner variant.
He is very good and knowledgable and he listens to what you have to say. He also gave us his email address and he has us email him every couple of weeks to give him updates on how my son is doing. He is very interested and caring.
We really like him and we feel like Ryan is getting the best care.
I would recommend him to anyone who has CIDP.

Rhonda

I remember way back when Dr. David Bod was on the Forum that he spoke very highly of a Professor Hughes, I think he is a neuro, probably located in London? I think Dr. Gareth Parry at the University of Minnesota in the Twin Cities is the best, had a lot better luck with him than I did at the Mayo in Rochester, MN where I was inpatient for 3 months…

Regrettably, Prof. Hughes is now retired. There are a lot of good consultants, but not many like him.

Deb
London

My doctor is Dr. David Cornblath. He is at Johns Hopkins, and is one of the leading researchers in the world with respect to CIDP and peripheral nerve disease. He does travel often to England, and elsewhere. Quite often, Hopkins will make payment arrangements for people from overseas. I do not know exactly how they do this, but there are always people there from all over the world seeking treatment. Although it may be much more expensive to get evaluation and treatment in the USA, your health is your most precious and important asset. I also suspect that the tests done at Hopkins will be much more comprehensive than in many other places. I know British Air flies direct from London to Baltimore once a day. I have been most pleased by Dr. Cornblath and his treatment protocols, and have made huge progress in overcoming this horrible disease.