Neurologists in Narberth, PA

Diane, sorry to hear about all your problems. Please register with the Foundation and we can provide you neurologist referrals and information about our Centers of Excellence. You can register at www.gbs-cidp.org or contact me directly at susan.farrington@gbs-cidp.org or 610-667-0131.

Hi Mary Ann. I do not know about the meds you are talking about....I live in Queens and I'm out in Massapequea Park alot. Spent months in North Shore LIJ and a few months at mount Siani in NYC for rehab. I have GBS and being tested for cidp. Call me any time you want to talk. 917-414-2069.

I would like to call your Dr. to see if he offers this treatment for CiDP. Its my husband with the disease. I have seen him bed ridden then a wheelchair to walking with a walker. It has been difficult for both of us. Frank is not good with the computer so I am his hands and his legs. I am so greatful for your post. He has been in MY Siani for rehab also. It was about a month. He did great then the relapse and he went down hill from there. He then was tested for CIDP. Failed IVIG, Plazma exchange then Rituxin was the treatment that worked. If you want to call me my phone is 631-940-9946

Cont'd.. Let her know unlike some of the other neurological patients she will see in physical therapy later on she will be okay. She will have to fight for everything she gets back but she will recover. Every GBS patient here has struggled through this, although some carried a much heavier load than others, we are all Getting Better Slowly. Each day we watch the sun rise is a good day. I am moved to tears each time I think about how quickly our normal lives can be taken from us, but the tears are more for how resilient the human mind and body is to overcome such diseases. I was not a very religious man prior to my illness, but I have regained a faith lost in the pursuit of worldy possessions. The prayers of family and friends better suited to pray for me is probably what played a major role in my recovery as well, and I am not afraid to admit it, as I say my prayers in church each Sunday. I am sorry her daughter is going through this at such a young age, but I think we all believe she will get better if it is in fact GBS. It will take time, a loving family and friends, and her own inner-strength. God Bless.

Angela's right!!! You need to keep your limbs and muscle's moving to help from getting muscle atrophy. That's what happen to me because nobody helped move my limbs around. I coudn't do it myself seeing I too was completely paralized from the waist down and was semi-comatose on a vent. If you scroll down you'll find a link to IG Living magazine that I posted a few days back. It's FREE and has valuable information on many of the Neurological Disorders out there. You can have the magazine sent to your home or read it online. If you ask, they'll even send you the back issues. That sent me "free of charge" all the back issues, back to 2006. Kris McFalls was their patient advocate nand she was great. She helped a lot of people with neurological disorders find a solution to their problems. I heard she was leaving IG Living, we'll miss her. Also GBS/CIDP Foundation International has two FREE booklets that are full of info. 1.) "An Overview for the Layperson" and, 2.) "CIDP-Chronic Inflammatory Demyelinating Polyneuropathy". These two booklets are great!! Hope this helps, I'll keep your cousin in my prays. Just in case you can't find the link I posted for IG Living here it is again: www.igliving.com

Perelman School of Medicine at UPenn is one of our Centers of Excellence. The neurologists, especially Dr. Mark Brown, are some of the best in the field. The contact information can be found on our webpage at: http://www.gbs-cidp.org/get-support/centers-of-excellence

Hi Clea. I am about 4 months into my battle against GBS. The foundation's website is gbs-cidp.org and there is a wealth of information there. In terms of the pain, if it is the painful tingling with the "shocks" on top of it, I take gabapentin (generic form of Neurontin). I started@300 mg 3 x/day and am slowly increasing to as much as 900 mg 3 x/day if that's what I need to get control of it. It's worked pretty well for me and others here. I am also on Tramadol and oxycodone for pain, but that is because I have a previous back injury. There are several people with CIDP (including some who had GBS and then got "upgraded") who are really active on this page. I'm sure they may be able to shed a more-informed light on things. Welcome to our "family" and thank you for all your work as a caregiver. Now that I am in recovery, I am so amazed at everything my husband did and still does to take care of me and help me get to where I am today.

Hi, Thanks for your replies. If you want to ask your neuro when you see him but we don't want to go any further north than Boca or south than Ft. Lauderdale. My husband is not happy with Boca Regional hospital. Poor attitude although competent and a bit inefficient with the clerical help. Our neuo is OK in Boca but only goes to Boca. Thanks, Margie Powers

I found one for you. Dr. Boltz comes highly recommended by the doctor I met and am proud to call my new neurologist. He is fantastic and energetic, has a great deal of experience with the condition but also the emotions that come with it. Apparently he and Dr. Boltz went to school together so let me know if that works for you.