HI There

Thought I would update you all, I have just been to see my neuro today, who has advised all my blood tests normal, the only thing that came back was the positive skin biopsy , which possibly shows inflammation. I have had full work up from Rhumatologist , even lip biopsy negative. No SS. Nav 1.7 mutation normal.

As the biopsy has suggested possible inflammation he has suggested trying a 5 day infusion of steroids in hospital. He is also putting in for an application for IVIG ongoing treatment, not just a trial as he thinks this wouldn't be worth it.

I asked him if this could get better, (the neuro I see is a PN expert who works in London and South Africa), he said he has had patients there where their SFN 'burnt out' he means just gone away! so there are cases where things have got better for some. I just guess they are getting on with their lives now and not hanging around websites, so maybe that is why we don't hear of too many cases.

I will let you know how I get on with my steroid infusion, which I think will probably take place in September.

Overall the Neuro was very positive and said he would keep me under supervision as was worried he would pass me back to GP like some have mentioned on here. He said I am a very unusual case so gp's would n't know what to do with me!