Hi Leslie,

A belated response-I just joined the forum.

You are not alone. I recently received a diagnosis of sensory ganglionopathy and am struggling to deal with half-body numbness and dysesthesia (feeling of tight bands around my legs and thorax). I’m still adjusting to the altered sensations. So bizarre, I feel like I’m sitting on jello. Now I know there’s a lot of fat on this butt, but this sensation does not represent reality!

I’m a science geek who has and am still reading the scant medical literature re: our rare condition. I can share what I’ve found. I cannot diagnose, of course, nor recommend treatments. But if you need someone to commiserate with, I’m here. This is a tough diagnosis, but we’re tough women! (66 yo F)