Reply To: Isolation

June 18, 2017 at 4:43 pm


It is hard to find a person or persons who really know what you are experiencing. The GCB/CIPD was great for me when my husband was first diagnosed with GBS and now we find out it is CIDP and that was only because we went to University of S. Florida in Tampa as we live in Ft. Myers. It was a awful 62 day hospital stay then 6 weeks of rehab, he has progressed about 89%. But there are days that I wonder to if this is a relapse, like this morning, pain, the pillow feet, more back pain than normal, but to go to our local hospital would be a joke, I would rather take him to our VET. I too and still trying to find out what to look for. Everyday he has stomach aches, migraines and more and I feel that he is getting worse, but our appt. in Tampa is not till July 11th,. Yes we have a local nuero, but they have no clue, they want us to come in to see them every time we go to Tampa to find out what the experts say! I should give them the bill!!!!!!!!!!!!!! You can always e-mail me at if you just wish to chat. One thing I have found, this organization put me in touch with a person in Sarasota, WHO only called me back once! So much for the support. I have signed up for a patient liason yet I have not heard back from this women. BE STRONG AND FIGHT! You have it in you, deep down inside. This has put my life on hold and ruined many aspects of our life.