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gerard1 posted an update 8 years, 11 months ago
Looking for a decent doctor, I have NF1 and unfortunately there are not a lot or any for that matter that are proficient with this disease, since there is no effective treatment or cure. I am not complaining, it is life and I deal with it but the pain is increasing so I decided to go for pain management. I have had surgery in the past, 50x and now it doesn’t make sense, I have tumors and it would be difficult to count all of them.
Hi Gerryf,
I am sorry to read about the NF1. It is my hope that you are able to find a healthcare provider in pain management to help you. If you get a chance stop by one of the hosted chats here at TPC. I find that it helps to chat with others that understand living with pain. The chats are on Monday, Wednesday and Friday at 11am eastern time. Take care
Thank you, I shall do that and although the pain can be very intense at times, I use it as an obstacle and not a disability
Did u try Johns Hopkins? I see they have a comprehensive NF center: http://www.hopkinsmedicine.org/neurology_neurosurgery/centers_clinics/neurofibromatosis/nf1/
I have tried several places in the north east including Mass General which part of Harvard and several other doctors and I have actually use Johns Hopkins for a class and their quality of service