Dearest PN Angels,

So it seems that the PN in my legs is now moving upwards.

From the first diagnosis of Profound PN in 2010 (obviously started long before that) the numbness stopped below my knees.

Now I noticed recently that my area over my knees is also numb.

My calves and feet have atrophied so that my veins stand out, as well.

I have both legs braces (with polycarbonate feet support to prevent foot drop) and a walker.

I can only walk a short distance, surely not half a block.

And my knees lock and hurt even when I exercise in the water, as well. I could pursue evaluation for knee replacement, but I"m not sure of the value of that procedure.

I had my knees evaluated two years ago, and they weren't ready for replacement then.

My SFN discomfort is controlled by Gabapentin, thank goodness. And since my legs have profound PN, they aren't painful, stinging or burning (except on the bottoms of my feet for some reason?).

Just checking in, I guess. Right now I'm rather discouraged, and my Immunologist has me withdrawing from Medrol (a form of prednisone) because my skin is tearing and my blood vessels in my lower arms are weakening.

It is always something, it seems.

My Sjogren's also seems to be progressing with drier mouth and eyes, so I'm seeing my Rheumatologist to discuss increasing my pilocarpine.

It is TRULY always something.

But, perseverance AND acceptance are necessary.

Hugs, ElaineD

sorry to hear about the spread of pn further up your legs and the progression of sjorgens. mine has also progressed above my knees, mine is large fiber and has progressed markedly in my hands. im having another emg/ncs in june on my hands and arms to see how much. Despite our best efforts, progression seems to be our fate.

Sorry to hear about the progression you both are experiencing, this is a nasty and unpredictable disease we face. My thoughts are with you.