I live in Rhode Island with my husband and have had a general diagnosis by a physiatrist, who performed an EMG test, with severe polyneuropathy possibly triggered by an autoimmune response to spinal surgery.
I am calling neurologists connected to Yale New Have and Rhode Island Hospital to get a more definitive diagnosis and possible way forward. New patient intakes are anywhere from July to September. One Intake coordinator was encouraging for an earlier appointment after I and my GP called. My physical and occupational therapists will also call to say they need a diagnosis to create a proper care plan for me. So, I am doing exercises to maintain some mobility with a walker. My upper body strength is still adequate for this although my legs have not gained strength. This is still very new for me, going from relative strength after the surgery to decreasing strength and sensation in my lower legs and feet, but with comet like nerve pain in my shins, arches and ankles.
I’m grateful for support from family, friends, PT,OT, and home health aides since coming home from a physical rehab, but am also looking for support from a reputable site like Mayo Clinic.