[Marlene]

Chirley,

Believe me....you are not whining. You are going through quite a bit so please use this forum as an outlet. Everyone here is in your corner and only wishes you the best. You've been dealing with some very rare and unique medical complication. And it appears they are not very good at helping you understand and manage your situation. Probably because they don't understand it very well themselves.

Can you get access to a doctor who specializes in palliative care who can oversee your medical care and make sure you get the what you need to ensure a better quality of life? You can combine medical and palliative care. Palliative care will address your needs on more holistic level.

Unfortunately, most doctors can't or won't fill that need for their patients. Especially when they don't have any more answers or options for you. I think your neurologist is of the mindset that he cannot do anything for you unless it's a crisis. And you need more than crisis management.