Originally Posted by kmeb

Well, after 9 years of progressive PN with complicating autonomic symptoms (gastroparesis, no solid food in 8 years) and heart issues - and different diagnosis - think I've finally gotten thru the mill of tests - treatments - and have found docs who have really looked at symtoms, biopsies, test results, etc. and feel they have found culprit....

ALthough I've had positive and negative amyloid biopsies in the past - just saw a cardiologist that treats amyloid patients.... wore a monitor for 21 days that shows I'm having frequent cardiac "events" that I'm not even aware of - some benign - some not so much - but I'm going to continue on my current heart meds unless a big change - then we may have to change meds and go for the biopsy..... (lots of events with SVT over 150 that I'm completely unaware of)... not so worried about possibe amyloid as he is the PN.....

Nuero reviewed sural nerve biopsy from years ago, other tests - fact that I was on high dose IVIG every week for a year and a half but end result is I'm getting weaker, ran a CMT panel, that was ok - but feels its definately a form of an inherited PN that is progressive - and affecting all systems - severe sensory, autonomic, and not yet as severe motor PN (theres no genetic test for this yet).. and that I need to make plans (which I am) to have people around to help me.... doing PT but so far just causes severe exhuastion - but hoping it will help build some strenth in the long run......

Also is whats causing my gut issues and not being able to eat - we'll see what happens there.....

So thats the scoop..... and I feel confident in these docs... and I'm not giving up..... but maybe I'll take it a bit easier on my body and stop trying to push so hard!