Dear All,

I haven't posted much just recently. I've had my genetic testing back which was normal and I've also had a response from the NHS panel regarding IVIG. The panel have agreed the IVIG, which I was surprised about, but I've been really lucky to have a neurologist that works at the national hospital for Neuroscience and Neurology in London, he actually specialises in inflammatory neuropathies. He had put the application through as an inflammatory neuropathy due to its presentation (NLD SFN) and that I had an unusual biopsy showing increased nerve fibers.

I've had funny feelings all over my body which started at the end of 2012, it wasn't until 2014 when I was told it was SFN and I looked up all the horror stories the pain kicked in, I mean over a matter of hours I felt pain all over my body , I could feel it spreading to my scalp while cooking the dinner. I started to take amitriptyline and that seemed to help a bit but the anxiety and pain continued so I increased the amitriptyline. The pain continued, I tried Gabapentin but it didn't work. By Christmas eve 2014 I wasn't feeling as bad, on Boxing day I decided to try Lyrica which my neuro had suggested. As soon as I took 25mg, I had hardly any pain, the pain did increase slightly so I increased this again to 50mg, then again up to 100mg. I have hardly any pain since upping this last February.

As I was hoping to get the IVIG I thought about reducing the Lyrica, which I have done for the past two months. I am on 50mg now. I still have minimal pain, and thinking to reduce even more. I am wondering if the pain was actually calming down last year but I didn't realise it because of the meds. I am wondering if it is possible for it to have gone into remission? I still get some pain in the evening, more of a prickly feeling, sometimes after a hot bath. Also get a lot of buzzing in the bottom of feet. I have also noticed just recently I have had funny feeling in my throat when drinking fizzy drinks, I think the bubbles seems to aggravate it. So is it getting worse, who knows.

I know I shouldn't be complaining, i'm just wondering what to do, shall I go ahead with IVIG, as I am concerned as was told it was thought to be a progressive inflammatory SFN. Obviously don't want it to get worse. Neuro is on long term leave so can't speak to him about it...!