looking for a CIDP-specialist
AnonymousSeptember 30, 2013 at 9:34 pm
I just got diagnosed with CIDP last week. I’m on prednisone right now and hoping for the best…
I’m suffering of a rare variant of CIDP – an axonal sensomotoric neuropathy. It took the doctors 10 years to come up with this diagnose.
I live in Austria, Vienna. In that small country, CIDP is not well known at all. I’ve seen doctors who didn’t know that disease at all… really bad, right?!
I searched the web quite alot the past months and I got so many informations about CIDP from US websites. It seems to me like there might be american doctors which are real specialists for CIDP. Comparing to the Austrian doctors who barely know anything about this disease, I’m staring to think, I might flight in to the US to see such a specialist.
I got a world-wide health insurance – so that wouldn’t be an issue.
Oh and I got relatives in Ventura County, CA. – but I would go anywhere in the US to finally see a doctor who really knows what to do.
So maybe you could give me some hints?
Thank you so much!
greetings from Vienna 🙂
September 30, 2013 at 11:33 pm
If you don’t mind a 9 hour drive to Dusseldorf, Germany, there is a “center of excellence” there. Details here: http://www.gbs-cidp.org/home/get-support/centers-of-excellence
Ventura is close to Los Angeles and there are two “centers of excellence” a few miles from each other. Drive time from Ventura to either UCLA or Cedars (Cedars is where my Neuro is located) is approx 90 minutes.
October 1, 2013 at 2:54 am
I doubt many doctors specialize in CIDP, because it is a rare disorder, but there are certainly neurologists who are more familiar with it than others. Jim’s advice sounds right to me.
AnonymousNovember 10, 2013 at 1:10 am
Hello there in Vienna!! I am a CIDP patient. I moved from Los Angeles to Ventura, and have not found anyone in my area to follow my progress as a CIDP patient; also I really like my Los Angeles doctor. So, I kept my doctor and make the drive to Los Angeles to see him. Ventura is a wonderful town by the way, so I hope you have a chance to see our city.
My doctor has two offices, one in Beverly Hills and one in Playa del Rey, both in the greater Los Angeles area. His name is Guven Uzun.
Hope you will be feeling better soon. My doc sez he would **never** put me on pred… I have a feeling you could do much better!!
good luck and happy travels!
AnonymousNovember 10, 2013 at 9:49 am
Thanks a lot for your response. Meanwhile I had to discover, that prednisolon was not able to give me any benefit. My disease got even worse. My neurologist said that a CIDP should response to prednisolon and that he’s not sure about the diagnosis anymore. He sent me to the hospital. The neurologists there don’t have a clue at all and I feel very helpless.
They told me that I show signs of damage in the central nervous system as well as in the peripheral nervous system. So they make me re-do all the tests which were already done in August. Tomorrow, I’m gonna get a new spinal tap :(. Then, they want to do new MRIs, NLGs and stuff. I’m totally desperate because I have to go through all that again. I was really glad that I got the CIDP diagnosis after suffering for 10 years. And now, I know nothing for sure anymore. And I really feel like the doctors here don’t really know what to do. Everybody tells me something else. I wish I could just get out of the hospital and finally see a doctor who can really help me. I don’t feel like I’m taken seriously here. They just keep testing me again and again… 🙁
November 10, 2013 at 10:17 pm
Daenerys, you did not mention if you have been treated with IVIG or Plasmapheresis, the two most recommended remedies for CIDP related neuropathy.
Immunosuppressant drugs like Prednisone are often administered after seeing a patients reponse to Plamaphersis and/or IVIG.
AnonymousNovember 21, 2013 at 4:43 pm
My 83 year old mother has CIDP. Her first episode was Septmeber 2012, and she just had another one this past October. The first time she slowly recovered over a period of 6 months, but her legs never got back completely to there prior condition, but she could use a walker. This time, she had a relapse with a continual decline over a period of one week until she could not move any limb. Dr. tried IVIg – it did not work. He then tried the Plasmapheresis and we saw a great improvemnt. He gave her six treatments every other day. He wants to keep her on Prednisone now. After a few weeks, her upper body movement is now excellant, but she still doesnt have strong usage of her legs.
AnonymousNovember 21, 2013 at 4:51 pm
In regards to Los Angeles, there are Doctors very familiar with CIDP treatments at USC. We saw specialists at USC originally, to get a diagnosis and initial treatments. They really know what they are doing at UCLA and know a lot about GPS and CIDP. I assume the same would be true at UCLA, which is closer to Ventura.
November 29, 2013 at 3:03 pm
My case is somehow similar to your mother’s, KKearney. I am 82 years old and I was dignosed with CIDP four years ago after blood tests and many MRI’s showed no sign of stroke. With older patients that is what doctors first suspect. Nerve conduction tests also showed demyalation. I live in a small Florida town but once I had a dignosis I only have to travel to the nearest small city where a young neurologist monitors my treatment. There is so little known about CIDP and every case is different that I see no advantage in looking for a specialist.
November 29, 2013 at 9:23 pm
A doctor (Neurologist or otherwise) who has experience treating GBS/CIDP may or may not be a “specialist”. I think it is important to get treatment from an experienced practitioner, especially at the onset of the disease.
I am paralyzed today because I didn’t have an experienced doctor when I was first diagnosed in the ER. The neurologist that got assigned to me had no prior hands-on experience treating GBS/CIDP patients. Had I been given the proper treatments immediately, I would be walking today.
I am now a wheelchair bound paraplegic because I didn’t have a “specialist”. I believe the chances of improving your quality of life, while living with CIDP, are greatly enhanced by having a good specialist managing your care from the start.
It is never too late to get a second opinion from an expert to make sure you know all the options and potential outcomes. The Centers of Excellence listed here http://www.gbs-cidp.org/home/get-support/centers-of-excellence have expert specialists who may be able to help improve your life. There is more hope for us CIDP sufferers in the proper hands of an expert.
You must be logged in to reply to this topic.