Facial Onset Sensory Motor Neuropathy

RARE, because so few people have been diagnosed. I've read there may be 50 people worldwide with this diagnosis.

ALS because it involves the peripheral nervous system. Both the sensory and motor systems. It is progressive. There is no known cure or treatment. The ability to eat and breath are slowly diminished to unsustainablity without aid.

OK, I have the rare blessing of acquiring this strange disease. There seems to be no way to know how or why I've been so lucky.

As of now I can still eat, although it's very difficult. Most food needs to be processed with a blender or something. I use a CPAP machine through the night while I sleep to help with extreme apnea. During the day I have to very conscious of my breathing.

The major issue seems to be with my facial, skull, neck sensitivity, Also the muscle atrophy to my upper body. Loss of weight due largely to the inability to eat properly. And whatever else seems to be taking over my bodily functions.

Does anyone out there have this “condition” or know of some who might? Please step up and say something so that we might begin to get the answers we seek.

thank you for any light to be shed.