I have IgM GD1b antibodies - it's a chronic axonal neuropathy that's rare and there's no standard treatment due to lack of clinical trials. I see the new neurologist next week. I'm guessing I will be sent for a lumbar puncture (will be requesting sedation for that thanks!!) and possibly nerve and skin biopsies. I'm hoping to qualify for IvIg in tandem with immunosuppressive drugs. Currently I'm taking 300gm Lyrica, 10mg Loxolate and a ton of slow release paracetamol (with coedine at night). I'm still working full time with a very understanding employer LOL

In terms of my spine my neurosurgeon says the fusions are well consolidated and no surgery is needed for the foramen and facet arthrosis as they aren't impinging the nerve roots - meaning the sciatic pain is part of the neuropathy. We discussed fusing the T11/12 but have decided against it at this stage & will revisit after I've seen the neurologist & know where I'm heading re the neuropathy.

I did PT, chiro, acupuncture & massage therapy before my neuropathy got so bad I can't stand the touch, but found it very helpful at the time. Hope you find some relief! What antibodies did you have?

Mairi

1997 - bilateral carpal tunnel decompression post pregnancy
2010 - L4-L5 microdiscectomy
2011 - L4-L5 ALIF
2013 - L5-S1 ALIF