Centers of Excellence

October 26, 2011 at 3:21 pm

First, it’s not happy making your acquaintance on the forum dealing with a severe and rare disease. I’d much rather make it under much better circumstances.

Second, I did a telephone consultation with Dr. Chin immediately after my diagnosis and right before I started my initial IVIG. I had sent all of my medical records to him to it was a comprehensive consultation although he did not see me in person. I was most impressed with him, so you should be reassured there.

Correct diagnosis is critical. The GBS/CIDP Foundation has a process by which they can designate medical facilities as GBS/CIDP Centers of Excellence. There are only 10 at present, and not all are even in the US, but if you have any doubts whatsoever, getting a full work up at one of these Centers of Excellence will be quite important.

I live in the Baltimore area, so when I developed CIDP 5 years ago, I finally ended up at Johns Hopkins Hospital for both diagnosis and treatment. Hopkins is one of those centers of excellence. I have since become very good friends with my doctor who is one of the pre-eminent experts in peripheral neuropathy. Over dinner last night, he told me that 40% of the patients he sees who have been “diagnosed” with CIDP actually do NOT have CIDP, but something else. I doubt that Dr. Chin would make that mistake, but misdiagnosis is, unfortunately, quite common.

Finally, with respect to the IVIG, do not automatically assume that because others have reported adverse effects of IVIG treatment that you will experience such adverse effects as well. I went through almost two years of IVIG therapy, and only developed mild headaches twice (both during the loading stage). Thereafter I was administered intravenous decadron immediately prior to the IVIG. I also had saline administered with the IVIG, part of the Hopkins protocol for administering IVIG. It sounds like they are starting slow and ramping up, which is both correct and a process to help reduce the incidence of adverse effects. Most of the time after my IVIG treatment (and after the recovery of my motor nerves), I had to tell myself NOT to get any exercise and to take it easy for the rest of the day because I really felt quite good!

I hope this information helps reassure you and provides some alternatives should you decide you need them. Remember that you are your own best advocate. Do not be afraid to ask questions of everyone and anyone involved in your treatment. Any medical professional worth seeing will take the time to answer your questions and talk with you.

Centers of Excellence

November 3, 2010 at 4:26 pm

May I suggest that you schedule an appointment with one of this Foundation’s Centers for Excellence? These centers have applied for, and specifically been approved, as neurological centers of excellence. To my knowledge, all of them feature doctors completely familiar with CIDP and GBS. A proper diagnosis is vital to proper treatment. Different experts have different philosophies of treatment, but all are expert in the disease. Even if the visit is a one time consultation, you can learn enough about your condition and treatment to help your local doctors properly treat you. In my experience, the normal neurologists at a normal community hospital lack the understanding or expertise to properly diagnose these diseases. I know that is a broad generalization, but as you read more and more posts on the forum, you will see that is true. Many neurologists simply do not excel with CIDP or GBS. I have personally been diagnosed and treated at Johns Hopkins in Baltimore, but there are at least 7 such Centers for Excellence in the country, and perhaps there is one closer to you.

As other posters have said, everyone responds differently. I started out with the 5-day loading phase, with no improvement. The next followup treatment 3 weeks later still provided no improvement. It was not until the morning following the next followup treatment 3 weeks after that that I started to see improvement. Within the next 3 treatments (9 weeks) my motor nerves were almost back to 100% (although the sensory nerves were not). My doctor discontinued IVIG treatment over a year ago, after around 18 months of treatment. My motor nerves have been at 100% for quite some time now, and my sensory nerves at around 95%-98%. I truly believe I am one of the very lucky ones, but there are others for whom nothing seems to work well. Just read other posts on the forum and you will see. The critical thing is to get an accurate diagnosis and begin proper treatment as soon as possible. The longer you wait for effective treatment, the higher risk you run of permanent damage to your nerves.