Sorry to hear you are having such a tough time....

I cant remember - what type of biopsy did they do on you and have you had the NCS/EMG"s etc for PN???? My PN is primarily full body sensory (the docs could clearly see this on my sural nerve biopsy - mostly large but also small fiber loss and axon degeneration) and others tests confirm it - but they have changed my diagnosis from CIPD to Heriditary Sensory Autonomic and Motor Neruopathy..... Components of automic of course involve your digestion and heart.... I have been on a liquid diet for years due to it - and recently had another cardiac workup that shows my heart is affected causing frequent svt's, etc, I get very faint, sob, dizzy, etc..... sometimes IVIG is used for heridiatary - if they can get approval for it ... but my IVIG has been stopped too - didnt show any type of long term improvement.... and your doctor has to be able to justify the treatment to your insurance to get it paid....

Have you seen a cardiologist and GI motility specialist? These could be issues contributing to your symtoms and all related....

Thats a bummer about them denying botox for migraines - have they had you try all the meds for it? If you arent responding to meds - I fight your insurance on that one.....

Hang in there