This is one area that so many are left to just wither away. It is so difficult because there aren't enough numbers to justify spending a lot of time or money or research on. In addition, the random nature of how and where radiation fibrosis starts and how it presents is a mystery, even to neurologists. After a barrage of tests such as EMG's, MRI's and even spinal fluid analysis, in the end the diagnosis process is only designed to rule out things like ALS. Neurologists won't spend a lot of time either, beyond very basic analysis and treatment because there is no money or real diagnostic codes for insurance purposes. A lot of survivors with significant issues can be misdiagnosed with ALS which gets the right care for managing symptoms, although radiation damage does not progress as fast as most cases of ALS.

I wish your husband and you well. Anything I can do feel free to private message me. The last thing I want is for all the folks dealing with radiation fibrosis to start thinking this is something they can expect. It is very rare.

Ed