Originally Posted by JoannaP79

Hi all,

I have posted before quite recently, I have a rhematic autoimmune disease called ankylosing spondylitis and now recently diagnosed with SFN following skin biopsy. Im seeing my rheum this Monday to discuss possible treatment options. He is keen on something called an anti TNF inhibitor,brand name humira (studies have linked this to causing demylinating neuropathies and in some instances SFN. It is however effective in many cases of ankylosing spondylitis - my primary original disease).

What I wanted to ask was- is it worth exploring whether the SFN is due to ganglion root damage? Might this help guide treatment or help further with diagnosis? I have read threads about specific MRI tests for that. I just wonder if it will get me any further along the road in trying some treatment or understanding the cause and therfore understanding treatment options.
My SFN symptoms are quite random which makes me think this may be the issue. The burning started in the top of my back, then mainly in the skin of my buttocks and then down the front of my thighs, knees ,lips and tongue, so in a non length dependant fashion. My feet hurt and go cold but that came later down the line.

If the ganglion root is the focus of damage am I right in thinking chances of recovery just go down the pan and regeneration of the root or nerve fibres isnt possible? :-(

On another note, I feel pretty worried about my skin. Before the awful burning started I noticed my skin changed overnight almost all over. It went white, really thin and like tissue paper, especially my legs where SFN is worst and hands and feet- this is still the case but worse. I worry that the skin on my legs will just split open and start ulcerating all over at some point down the line. I know it sounds dramatic but I do feel like that could happen in the near future. Do others have skin changes? Is it ultimately my destiny to have ulcers all over my legs if the SFN continues to point of total degredation? I already have significant loss of density according to my biopsy and the awful pain only started in October.
Thanks everyone for reading.