Hi I have seen so many consultants. I have elevated SAA and have been to the NAC twice and discharged as they said they had no evidence and i didn’t have it.
My problem is I think I do have this and the journey to diagnosis is particularly difficult as I have been to the centre twice.
My light chains are normal.However I have every possible symptom you could imagine painful joints lumps around eyes tingling and numbness severe gastric issues dry mouth reduced urine.
I recently saw a private physician and he wants me to have a pet Ct scan. I already had this 15 months ago.
Does this give any indicators of Amyloidosis ?
Also have had endoscopy colonoscopy small bowel mri. Only one biopsy was stained and that was negative in February.
My GI consultant keeps telling he knows nothing about the disease.
I’m being sent from pillar to post.
My urine test showed leukocytes no infection and no protein
UACar was 2.18
Any advice appreciated
Thanks
