Hi all,

Perhaps my last post was too long winded as no one has replied. I will keep this as short and to the point as possible in hope some one can help. I know i have a tendency to waffle on!

Ive spoken to others in the uk ref accessing ivig so thats clearer now. l still can't find info ref taking enbrel ( anti tnf biologic) and ivig at the same time. Does anyone know if this is possible? Has anyone been in this position?

My neuro said muscle atrophy is not usually associated with small fibre nerves but larger ones. My calf, bum and thigh muscles are significantly smaller since this thing started. It could be other autoimmune probs but fear it means that large fibres are involved. Due a repeat nerve conduction in sept. Have others experienced this.

Thanks all and if anyone has info on the above it would be a real help to hear from you.

Hello Jo,

I just wondered what you were told by others in the UK receiving ivig for SFN? As you know, it was a suggested trial for me. So if the ivig does help what happens next?

The only way I guess to prove it works is to repeat the skin biopsy but they won't let you have a repeat biopsy in the UK, unless you pay for it yourself.

It is all so frustrating, keen to hear what you have learnt anyway as I am also confused.

I had wasting of Gluts, Quads and others in lower half of body. I was a diabetic in poor control when I had a car wreck and had hard shock to right knee and lumbar region of spine. Was able to walk away but trauma started a process of worsening Neurapathy and Amyotrophy. The wasting bottomed out after about six months but had started falling and went on walker for a time. After that "critical phase" the strength has gotten better but seems to have stopped short of where I used to be. Hope this mixed news does not discourage. Ken in Texas.

I've lost muscle but I'm not sure it comes from the neuropathy because I have SFN. I think it is from lower activity levels. I was was an avid exerciser before this now I just do what I can.

Thanks both for your replies. It seems to have halted but may be imagining it!