Shaking and other fun stuff

[karenjane]

Hi.  I have biopsy proven familial amyloidosis.  Other than proteinuria and moderate kidney function loss I am not bad.  Over the last few months however I have had severe head pressure (NOT pain), worsened with movement and some occasional blurry vision and my blood pressure that was controlled with meds has been way up and then way down.  My doctor put me on adalat xl which initially helped a great deal. My doctor has also scanned my thyroid (no result back yet) and done bloodwork for the same, but hasn't found anything.  Now I have some sort of internal tremor going on that worsens significantly when I lay down and try to sleep.  I'm wondering if this could be amyloid interefering with my pituitary gland?  It's getting so it's difficult to get through a work day yet neither my nephrologist nor my gp seem to think anything is really wrong ie: I'm just an anxious woman panicking.  I really rather resent that since I do in fact have a nasty little disease that as I understand will eventually be the undoing of me.  Should I be in a different forum?  Help!  

[karenjane]

Thanks,

When one asks for an endocrine evaluation, specifically what tests will be included?

K.

[Mark Lupo, M.D.]

amyloid can infiltrate the pituitary -- so it may be worhtwhile having an endocrine evaluation to explore this possibility.