Centers of Excellence?

How does it work to be seen by the doctors at a Center of Excellence?

The closest hospital to my house is the Perelman School Of Medicine at University of Pennsylvania. All of the doctors listed take my insurance (thank goodness) - but how does it work to be seen by someone?

I was first diagnosed in Feb of this year, received 5 IVIG treatments and was progressing slowly. Relapsed in early April and had six plasmapheresis treatments and the result was amazing, I was almost back to normal - walking without a cane, hand strength back, all tingling gone - but its now 10 days after my last plasmapheresis treatment and it's all coming back. The numbness, tingling, weakness, difficulty walking. I will be going back to the hospital tomorrow, but I'm scared that they have tried all they know how to try and am now thinking about making the move to a Center of Excellence for treatment, even though it's 90 minutes away. But how do I get in? Does anyone have experience with this? Please let me know, I want to start making calls tomorrow.

I have an appointment at a Center for Excellence in June. I had to have a referral from my Neurologist then had to submit certain requested data and reports to be reviewed. They just wanted certain labs, notes, and tests but not everything. I had to keep it concise-less than 30 pages. Then they let me know if I had been accepted for an appointment or not. Now I'm gathering everything that I need for that appointment-copy of the referral, scans on discs, past notes & results, and my questions. I hear that you don't have much time so you have to be organized and ready. They have also scheduled an EMG for me there.

Hello! My son, now age ten, was diagnosed with GBS in December 2014. He was treated with IVIG and had good results. First a fast recovery, then a very slow one. He relapsed in February 2015 after a sinus congestion. since our first neurologist seemed more confused than we were, we changed to a more experienced one and to a hematologist. I mention this because I feel it has been a fantastic combination. Neurologists treat the symptoms, hematologists the cause. He prescribed steroids. I know they don’t work for everyone, so they first tried them for 5 days. In the case of my son, it took little time to see results. They then prolonged treatment to 14 days, then 14 days of half dose, 7 days of 1/4 the dose, and finally 14 days 1/4 dose one day yes and none the next. Now he’s back to being a kid, running, skipping and happy. Of course we’re always concerned of relapses. Just last week he got another sinus congestion and he was constantly testing his strength to make sure it wasn’t going anywhere. Thank God nothing happened. He’s stll running!!! We were also told recovery is like the stock market on the rise. You may expect some days were recovery is stalled and even on the fall for a bit (if the body is fighting a cold for example), but then it should start going up again…
Steroids suppress the immune system and are anti inflammatory, and therefore can be a good treatment option. But ice also heard they don’t work for everyone. The hematologist explained it takes 30 weeks for the antibodies to “deactivate” completely, so they sometimes prescribe IVIG treatments or plasmapheresis every 3 to 4 weeks for 30 weeks, until they become inactive by not allowing them to react. It’s good to hear from an hematologist how the immune system works with GBS.
The reason I mention all this is I do think getting the right treatment takes some trial and error, and lots of patience. See what they have to say at the Center of Excellence. Hopefully they also have hematologists and neurologists in their group.
I wish you a steady recovery and hope you get back to your strong self again. It takes time, lots of it. Keep a positive attitude. And patience!!! Our hematologist always mentions 18 months as the time we should expect for complete recovery.

Tarhealing - That is so helpful, thank you!

Samarho - Thanks for your reply, I am so happy the steroids were effective for your son! I am hospitalized again, this time for the third time. It is my 40th day this year being hospitalized, and I just hope I can get some answers. If it doesn't look promising, I will be doing whatever I have to do to be seen by a doctor recommended by the GBS/CIDP foundation.

I hope you’re doing better today and that your treatment works wonders this time. Remember it takes time and patience. I’m sure you’re in good hands and you will be fine again. Maybe not right away but you will get there.
I know how frustrating relapses are. Up till now my son is still doing fantastic even through his sinus congestion. Now his sister has a throat infection, fever and all. Every time one of his younger siblings brings a bug home my heart freezes for a bit and I become paranoid, watching every movement he makes. I’m so ready for summer break where I can keep them more or less away from infections! I guess that is the way we all become after GBS. All I know is there are treatments, and it takes more than one, and there are medical teams that are more knowledgeable and better prepared than others. Another challenge is to find them and to get an appointment. Keep us posted about the Centers of Excellence. GBS is a huge challenge but your not alone. We’re all thinking of you and sending positive energy your way. Get well!!!

By the way, have you tried getting in touch with the GBS-CIDP Support Groups from the Foundation? They have a list for cities in different states. You can call them and maybe they can guide you and give you better referrals in your area. I’ll try to find the link and post it.