View Single Post
Old 01-30-2016, 03:11 PM
MAT52 MAT52 is offline
Member
 
Join Date: Feb 2015
Location: Scotland, UK
Posts: 529
10 yr Member
MAT52 MAT52 is offline
Member
 
Join Date: Feb 2015
Location: Scotland, UK
Posts: 529
10 yr Member
Default

Quote:
Originally Posted by DavidHC View Post
Thanks, Kiwi. Good to know. Now to find someone to do it short of going to the Mayo Clinic or Boston.

If you read this, I'm curious whether it's possible that they find a new mutation with me and just don't know. I'm quite ignorant when it comes to genetic testing, so I'm basically wandering if when they test me they'll first notice a mutation, and then have to inquire whether said mutation is a dangerous mutation. Thanks.
I am not too knowledgeable about this but aren't there other non hereditary forms of Amyloidosis? Owing to a frequently high total protein in full blood count and a widespread small fibre neuropathy and history of Rheumatoid - my rheumatologist requested a Bence Jones urine test to check for Amyloidosis or Multiple Myeloma. I got a bit freaked out when I found out what he was looking for but had a phone call late on Christmas Eve saying it was negative. Hugely relieved but have been wondering what is making my protein high, also evidenced by paired oligloclonal bands in my spinal fluid and serum blood.

Do you happen to know whether it's still possible to have Amyloidosis or MM with a negative Bence Jones?
__________________
If you get lemons, make lemonade

Sjögren’s, Hashimoto’s and Systemic Sclerosis with Raynaud’s, Erythromelagia and small fibre polyneuropathy, GI problems top to tail, degenerative disc disease and possible additional autoimmune diseases
MAT52 is offline   Reply With QuoteReply With Quote