Hi Jk,
Thank you so much for taking the time to respond. Hmmm.. well, I just plain don’t know. I agree with your comments as to maybe/maybe not CIDP. I’m actually wondering if I’ve got a couple of things happening, hence the confused picture. Meanwhile, tho, mestinon has been found to help with general weakness associated with autonomic dysfunction, not just MG and I have done better on this and florinef than without.
However, the weakness in the upper and lower limbs has been variable and originally, seemed to be worse with postural-related issues ie when I stand too long, my legs give way and I drop things and the mestinon helped somewhat with that.
Meanwhile, in the last 12 months, the weakness has been increasing and not related to positional demand. Physios have reported weakness in leg and hand muscles along with some decreased sensation, but these are progressing particularly in the last 6 months. The absent ankle jerks only started a few months ago despite starting IVIG. So, shrugs… I’m totally confused. Meanwhile, though, the foot burning and leg weakness can be really well (tho temporarily) controlled with dexamethasone (short course – 3 days), so this seems to reflect a definite auto-immune response!
I know it’s hard for you to say, but, I gather you don’t think this fits the usual CIDP picture? Any thoughts about other AI conditions eg Sjögrens, AAG??
Cheers and thanks again.
Libby