Hi there ,

Not sure if you know my story but I have NLD SFN confirmed by punch biopsy. The biopsy showed increased nerve fibres so they think it is an inflammatory neuropathy. The neuro has therefore put in a application for IVIG. After the NHS loosing the application, the new one went in yesterday so still waiting to hear back from the panel.

I have had gentic testing done last year the SCN9A gene. This got lost somewhere along the line and so he requested that I have it done again, which I did in September. The results are back but nobody has got back to me as the neurologist is now on long term leave.

I am very worried about my 4 year old son, he is complaining of bugs crawling over him, and was saying at nursery he felt wobbly like a jelly!. I think I'm probably being a bit too panicky but because I haven't had the results of the gentic test back yet then I can't stop worrying that he has SFN too. If the Genetic test comes back normal can it still be passed on? Mine is idiopathic but suspected inflammatory. As the previous IVIG application got lost , it had to be signed off by another consultant, i would have thought if i did have the mutation they wouldn't go ahead with the ivig and signed the form.

Can't stop worrying , so fed up with it all!