I am searching for imformation regarding AL amyloid and Localized AL amyloid and Localized AL Systemic.- I was diagnosed in oct 2013 with amyloidosis of small intestine, jejunum area ,the dx was made after performing a Laparotomy resection. Most of the jejunum is affected with subserosal bleeds, haemorrhages, ulceration, acute inflammation with intermittent areas of thickening.through most of jejunum.-The Resected specimen was stained with congo red and showed a green birefringence in polarising light. Report said -Findings in immunohistochemistry favour AL Amyloidosis. - - -- Bone marrow biopsy stated Mild marrow plasmacytois [3%] An immunoglobulin light chain restricted B-cell not detected. Less than 1%of total cells co- express CD38 and CD138 consistant with plasma cells. Plasma cells cannot be accurately quantified by flow cytometry as large numbers of cells are lost in processing. Anyway the SIg kappa = 3% SIg lambda =1%and lots of other numbers but i think these are the main numbers.--- Blood FLC [N Latex] were -Lambda =75mg/L [ref. range 8 to 27] HIGH -- Kappa =32mg/L[ref. range 7 to 22] HIGH --K/L Ratio =o.43 [ref. range 0.31 to 1.56]NORMAL.---So this seems like the main markers used to determin my first diognosis of amyloidosis Oct 2013 -.now they had to do MASS SPECTOMOTRY which was done in May 2014 = unequivocally AL Amyloidosis. // I was started on mel/dex in August 2014 WITH FLC IN NORMAL RANGE PRIOR TO CHEMO.- Did 5 cycles 5 mths chemo.and realised after support group imformation Why am i on chemo with NORMAL FREE LIGHT CHAINS.-I stopped chemo after asking Dr same and getting this awnser [Thats the way it is, we have to move along with this appointment or i'll be here all night, i have other patients to see] Dec 2014 Dr then wrote out script for my chemo. This appointment took not even 10 mins and i had to travel 1000 klm to see him.-- Sought another Dr after that as he had me doing 18mths chemo.----New Dr Jan 2015 said chemo would have done me no good at all and thinks the amyloid is being produced locally in small bowel and no chemo required unless i was systemic.No signs of that and had a fat biopsy to check approx May 2015 test negitive.FLC Normal ///// I would like to know if AL amyloid light chain comes from plasma cells detected in your blood which is produced in bone marrow.---How can AL be produced in localized non systemic form of amyloidosis. Like they say i'me unequivaly AL but no free light chains eg [negitive bone marrow tests;] no systemic detected eg [no other organ involved pluss negitive fat biopsy] --- I noted this on my Oct 2013 FLC blood investigation and at the bottom it states [PROTEIN COMMENT -normal K/L FLC ratio./ increased FLC concentrations can occur not only when monoclonal light chains are present but also when immunoglobulin synthesis is elevated eg autoimmune diseases or immunoglobulin excretion is reduced eg renal impairment ]--- I realy don't know what type amyloid i have just doesn't make any sence to me - AL - AL LOCALIZED -LOCALIZED. ///Isuffer with chronic sickness not nausa but flue type illness- fatuige no energy -chronic severe pain Left side small intestines- shortness of breath is improving -shingle type rashes,itchy, sometimes painfull red lumps hands feet abdomen scalp pubic area, -left foot pain with pins needles and colder than the other -lately my eyes feel like grit in them and vision is hazy smokey.-chronic constipation- dizziness---Ime lucky my pain is under control but the feeling so sick all the time is exausting. Would be great to hear from anyone who can shed some light on this or has amyloidosis of small intestines to compair notes treatment ect.Sorry to make such a long post and go into such details THANKING YOU ALL John