[QUOTE=LizaJane;1256241]I believe the dose is higher for demylinating neuropathy, and if you have that, the dose would normally be approved.

But you sound like you might have Lyme, which causes both sorts of neuropathy. That's what causes my neuropathy.

Please get a full Lyme w/u from a doctor who actually treats late lyme.

Liza Jane[/QUOTE

Thanks for this post Liza Jane. I have a very widespread and advanced SFN and ganglionopathy as part of Sjögren’s (high ANA and lip biopsy positive) but here in UK (I’m in Scotland) IViG and other big gun biologics such as Rituxan would only be available to me if my CNS were to become involved. I’m on the maximum dose of Cellcept but it appears not to be working and my case is up for review. I’ve asked numerous times about IViG but they say it’s too expensive on NHS and wouldn’t be appropriate anyway since they think the SFN of Sjögren’s is generally self limiting. Someone clearly forgot to tell mine to limit itself as every part of me is now turning increasingly numb and I’m losing balance and a liability crossing roads etc!