Hi Aug71,

I am so sorry about your diagnosis but glad you are reaching out for support.

I would encourage you to consider a second opinion. They are sometimes life or disease course changing. There may yet be interventions that can be helpful if there is something causing the condition or to stabilize the situation to minimize damage to the nerves.

I had the best luck getting specialists for an odd ball health situation going to a major academic medical center. It required travel on my part but it made a difference. Please don't accept a dire prediction on outcome without getting more info from an expert first. You are worth it.

I hope you find answers and relief soon,