Again, may i make mention of the 'Liza Jane' Spread sheets to have with you at your appt. You can print them off....just Google it if you can't find the reference post in the 'stickies' at top of this forum.
By being 'armed' with this, you'll be able to have more ammunition with you in case the Dr DOES do the "I'm sorry nothing we can do" thing. There are MANY things that can be done! And i would NOT accept your Dr telling you this situation is 'permanent'. If he insists on this......have your pad ready and ask him by what diagnostic standards is he making this prognosis. THEN, indicate (Per Liza Jane's spread sheets) WHY can't certain tests be done that haven't been done yet.
Be ready to PIN this Dr DOWN with targeted questions if he's gonna try and write off your husband's situation without digging deeper into PN.
Now maybe you are interpreting your Dr saying "There is no cure for PN" ?
That's One thing. BUT this does NOT mean his condition is permanent!!
Those are two completely separate pieces of information.

And don't worry if you DO get emotional! maybe that's for the better!
This Dr, which I'm sure you are paying top dollar for NEEDS to DO his HOMEWORK and if he CAN'T follow thru, then ask for a referral to another Dr who knows more about PN.
There is absolutely no reason for you and your husband to lose hope.
There ARE answers! There may not currently be a 'cure' for PN.....BUT there are many actions that can be taken to potentially help turn his condition around!
You need definitive reason from this Dr for saying this is 'permanent'. He needs to prove that to you via diagnostic workups and test results.

PLEASE get your hands on these LizaJane sheets I keep harping about! They will equip you with knowing WHAT to ask for !!

Please let us know how the appointment turns out!

Truly caring & Praying
Rae