I've lurked here for some time, I have what they call SFPN idiopathic.

I come from a medical family - 6 MD's in my family and I have read a lot of the papers on this - I know the difference between correlative studies and hard science.

First, the medical industry and research industry is about the flow of money - the MD's are trained to sell you this idea that they know what they are doing - but beyond physical repairs (broken bones, knee replacements, sewing up cuts, cutting out cancer, C-sections) most of what passes for medicine is hand waving.

If you notice that your doctor is clueless - you are on the right track - if your doctor says "I don't know" - and often - you probably have a pretty good one.

What prompted this post is the work where they saw that intravenous gamma globulin (IVIG) helps. It is not a practical treatment, has lots of risks you don't want - but the fact that it works changes things.

I think (and could be quite wrong) that what I have is caused by infection. The fact that it gets worse at times - and I feel like I'm sick - but no fever hints at that. There is a misconception that the blood tests will show infections - just not true - part of the the overstatement of medical knowledge. They can detect blood born infections - but there are infections that stay in places where there is little blood flow - just diffusion across membranes that limit movement.

A few of examples may help make this clear - not many years ago - if you had Lymes' disease the would send you to a psychiatrist - today they can detect the bug. Every year they discover new infections - and ways to detect them.

In another case, there was recent work where they treated back pain with long term antibiotics - and now know that it works in many cases. ( The disks have very little circulation ). Not that this has reduced the surgery rate - talking and handing out a prescription is not as profitable as more drastic interventions.

We also know that the chicken pox virus never goes a way - can return latter as shingles. Anti-virals don't eliminate it.

I'm not so interested in palliative care - many of these can cause other serious problems. I am interested in trying interventions that are outside of normal care.

So I am interested if others here are thinking the same thing?