Looking for a specialist
AnonymousFebruary 14, 2007 at 5:01 pm
Anyone out there from the Carolinas or Georgia that can knows a Dr. who specializes in CIDP? I have so many questions and my doc has few answers. Mainly where can I expect my health to be in five years so I can start preparing for it now? How long can I expect good results from IVIG? The list goes on…….
AnonymousFebruary 14, 2007 at 5:50 pm
As I understand it the effects of IVIG only stay in the body for 3-4 weeks. So if that is your treatment of choice expect to be on it for intervals if your symptoms continue. My husbands Dr. is trying to “kick” the CIDP into a remission state by giving him Rituxan. Cellcept didn’t work for him.but I heard it has worked for many. 🙂 If I can be of any help feel free to contact me….we live in Maryland. Have you checked in the Atlanta area ?
Good luck to you.
AnonymousFebruary 14, 2007 at 9:38 pm
Our neurologist, Darryl Thomas, in knoxville, is pretty astute.e also asked for a second opinion, which he gladly helped us get, so March 7th we are going to see a Dr donofrio in Vanderbilt. He has done research in this area and is supposed to be pretty good as well.
AnonymousFebruary 16, 2007 at 12:19 am
I hope the Dr. Donofrio isn’t the same one who told me to de-stress my life and stop wasting my money on Dr. visits. He (I later read) erred in reporting facts of my case to the daily Dr. visit notations. And kept me waiting on more that one occasion over an hour in the exam room. No apology, no nothing !!
If he couldn’t diagnose my case, he should have referred me to one who could. He is a highly respected Neuro, who has written many papers. I guess he is good for some patients, not for me !!
Anyway, I had good results at Duke hospital in Durham NC. It is a University research hospital. I have heard good things about UNC at Chapel Hill. Also good things about Emory in Georgia, and U of South Carolina at Columbia SC.
No matter where you try, ask your prospective neuro how many CIDP patients he has seen. Without experience, you are out of luck. Your best bet would be the research Universities. They get to see more of the rare diseases, the regular neuro’s refer the tough cases to them. I’d start there.
AnonymousFebruary 16, 2007 at 12:32 am
I live in the Upstate in Greenville and have a very good neurologist.His name is Dr.John Absher,and he’s here in Greenville.I get IVIG infusions at home.His office set it all up.He’s answered all of my questions and has been very honest with me about my expectations.If you want more info on him send me a PM.Sorry you have CIDP,but welcome to the site.
AnonymousFebruary 25, 2007 at 3:32 am
Glad you have a diagnosis-this seems to be the biggest problem. I went on the medical merry-go-round for many wrong diagnoses.For too long. If I’d listened to the doctors I’d had 2 major back operations with rods/screws or be sitting at home wondering why my Fibromyalgia put me in a wheelchair.
Somehow luck turned for me and I went to a Charlotte, NC neurologist to see if back surgery would be useful. He was an excellent neurologist and also a neuromuscular specialist. Just opened a clinic for CIDP/IVIG infusions.
I will send you a private message with the information with “CIDP” in the header.
The summers at Edisto Island at the cottage “Gone with the Wind”-how low country can ya get””
AnonymousFebruary 27, 2007 at 12:26 am
Was he at vandy? the doc you refer to?
I did a google search on him and found this. Looks like he came from Wake Forest. They used to have a good basketball team.. hehe
When I went to vandy they acted like they could care less about CIDP. Like this guy they were all about als. For me vandy was a bad experience, in more than one way, and on more than one occasion. Having said that, Dr Uskavitch is moving his practice there, and I shall follow. I’m doing better under his care than I have in years. Those experiences goes back a few years so maybe it has improved. I was in the vandy stallworth rehab, oh 2 years or so ago, it was the most miserable experience of my life. They couldn’t get the correct drugs, correct amount, on and on. The people where cold and uncaring also. I was worse when I left, than when I got there, because of an injury I received there. I would rehab in a gutter before I would ever go back to that rehab center. 6 months later I was put in Tennessee Christian Rehab, and I never had it so good. The nicest people in the world. They have since been bought out, and I hear it has changed. This year marks my 9th year with CIDP, it put me out of work within a month after I started getting weak. I think I have be admitted to or seen a doctor at all but 2 of the hospitals in this area over the years. I hate the thought of going back to Vandy.
AnonymousMay 4, 2007 at 9:20 pm
Good neuro At Emory in Atlanta Dr. Linton Hopkins. Think he deals only with GBS/CIdp patients. Also at Peidmont Hospital in Atlanta DRS. Gilbert, Stuart and English have seen 100’s of cases of GBS/Cidp. Shepherd Spinal Center is nextdoor to Peidmont and deals with any and every thing spinal and neuropathies. One of the premiere institutions dealing with these in the country.
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