Sounds like you both could use a good doctor to manage your care. My best suggestion would be to look at teaching hospitals.

Starburst,

I'm sure this may be more problematic for you on the NHS, but maybe you could explore option through private pay funds they give you (I have no idea how this works but have heard others talk about it) and then once you find one, then maybe it's possible to see him/her again through the NHS. Is this even possible?? Like I said, I'm not sure how this all works but hope it's an option for you...as teaching hospitals are usually the best place to find unusual specialists, that aren't widely available.

Sylvie,

I'm curious about your ophthalmologist saying that there is 'visible' SFN as a result of your dry eye exam. Can you provide more details about this...I'm not sure i understand. BTW, have you had a skin biopsy for SFN?

I don't understand how or why these doctors you see are dismissing treatment of your obvious severe state of your condition. What are they saying is the reason they can't help you? I certainly hope you have better luck at NYU. Glenn (a regular poster here and expert in neuropathy) speaks highly of NYU, so I'm optimistic you'll have good results.

And just so everyone interested in autonomic dysfunction knows: Dysautonomia and Autonomic Neuropathy are the same thing, so searching either will direct you to similar or the same sites. Most sites (like Wiki, Mayo, etc) will use the names interchangeably...or other names, such as autonomic dysfunction, dysautonomic neuropathy, etc.

Dysautonomia is technically 'dys'function of the autonomic nervous system. Neuropathy is a disease or dysfunction of one or more peripheral nerves and autonomic neuropathy is therefore the disease or dysfunction of the nerves involved in the autonomic system...which is a subset of the peripheral nervous system.

All the same nasty condition that can turn our lives upside down. But the upside is there IS treatment available, but it just requires the right doctor. I wish you both success in finding that doctor.