April 4, 2016 at 4:47 pm
I am seeking a medical center to get a second opinion. I am considering Mayo Clinic. I am wondering if anyone has had any experience with them and who they would recommend?
April 4, 2016 at 8:56 pm
The one listed on the Center of Excellence list. I would assume that they have physicians who specialize in CIDP.
April 5, 2016 at 4:59 pm
Susan, I have no first hand experience at Mayo. However, other members here have cited Dr Bartleson in Neurology as very knowledgeable: http://www.mayoclinic.org/biographies/bartleson-j-d-jr-m-d/bio-20053090
Also Dr Tracy seems to be the current CIDP/GBS specialist at Mayo:
April 5, 2016 at 9:56 pm
I did apply for an appointment to Mayo Clinic Rochester, Minn some years ago. In response, I was told that although they would accept my case I was placed on a months long waiting list. When the scheduled appointment time arrived I was assigned to Dr. Tracy.
Unfortunately, she was called away for something or other and I was re-assigned to other doctors.
However, I expect your care would be in the best of hands no matter who you were assigned to. There are some doctors at Mayo Clinic Rochester that wrote the neurology textbooks that other doctors study in medical school. I can recall my Primary Physician stating, “I read his textbook in medical school” when referring to a doctor at Mayo.
Other doctors at Mayo Clinic have helped develop the EMG/NCV testing methods and interpreting protocols.
I note you may now call them about appointments or apply on line.
October 28, 2018 at 4:45 am
After 5.5 years of progressing PN in the front halves of both feet, I finally received in May 2018 a diagnosis of CIDP, and in July-October 2018 my neuro and I took some aggressive treatment (Prednisone 40/mg day, and heavy-dose IVIg for three months).
Unfortunately the progressive of my symptoms (total numbness, burning, weight bearing pain) has not been slowed by these aggressive treatments, and they have been put to a halt, and I’m now taking Mycophenalate although not with much optimism.
So I interviewed and got accepted at Mayo Clinic out of Rochester, MN. I spend the week of Dec 19 with them. My understanding is that they will “figure out what this is and if its possible how to stop it.”
If anyone wants to learn more about my Mayo journey, or, if anyone has any tips on how to prepare, please reply.
July 21, 2021 at 4:28 pm
Hi I would be very interested in your experience at Mayo. I am in Jacksonville Florida where there is a mail here. I was just diagnosed with CIPD
July 22, 2021 at 7:04 pm
Hi all. Next month will be 5 years of going to Mayo, Rochester. I have Lewis-Sumner varient, and after being told in Montana where i live, that I had ALS, had to get the old second opinion.
Dr. Sarah Berini, at Mayo, has been so incredibly helpful for me, as well as coming up with the corrcct diagnosis. Had GBS in 2005, and thought I was recovered. In 2014, Thenar muscle in my R.H. started to atrophy overnight, and my legs, particularly L., started getting weak. I was a professional musician, and the SLOW process of trying to get an answer, ended that for me. Dr. Berini has seen me through lots of up’s and downs, but slowly going UP. I take cellcept, IG every 10 days, and lots of pain meds. I’m able to teach still, and play piano for myself. Also, walk slowly. I recommend Mayo without reserve. Best to you!
September 25, 2021 at 12:06 pm
Thank you all for the recommendations, we will definitely look at the proposals at our leisure.
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