pn
 

Onset 10 years ago from very healthy to within a year, wheelchair and other ambulatory aids. Have had all the tests and even IVIG (did no good) - sural nerve best disagnostic tool i've had - almost complete loss of large mylinated fibers, less loss of small, also loss of both large and small unmylinated fibers, and severe damage to axons.... nothing they can do for the pn at all, I accept that, my biggest battle is with the autonomic portion, gastroparesis very very severe from it and constantly have malnutrition and nausea every day, cardiac issues, and severe back pain and weakness... the back pain is from disk disgeneration and I think from being so sedentary, another MRI this week to see how bad it has gotten.... they would do surgery if I could get around normally but I cant, so we're trying to find some alternative so I can least sit up for more then a couple hours at a time.

The weakness is scary and progressive - but PT tried repeatedly has just made me worse.... so just take it day to day... I dont expect much expect hoepfullly maybe some relief with the gut so I can eat something again,and a lessening of the back pain.

They think its a form of heridtary sensory motor automic PN, but there is no test for the form yet. And yes, another fam member has had PN in his feet for 40 years with no diagnosis...

Ya never know whats gonna happen, just take each day for what I can make out of it.....:rolleyes: