Hi Terrance my amyloid is in my kidneys , GI track, nervous system (neuropathy in feet) it could be elsewhere. I am feeling well thank you. My hematologist says I’m doing better than most ppl. I have kept a positive attitude and won’t subscribe to any of the listed side effects!! My only bother is I’m tired a lot (which is to be expected) I still do things like walk every morning (best energy time) and cook and clean a bit. I also visit with my family. Many ppl who have had the sct say that by the 100 day mark they feel mostly like their normal self again. Oh and I had month two blood work done yesterday and my light chains are moving in the right direction. My red blood cells , neutrophils and hemoglobin are still low which means I still don’t go into stores or indoor socializing other than with close family members. When is your sct scheduled for?

Simple blood test: get your GAD LEVELS CHECKED. It could be Stiff Person Syndrome. This lab is like a $20 test!

Hello Janice,
Sorry to hear of your muscle discomfort, I hope it subsides. I am now 1 yr past my SCT, I do suffer from attacks of severe muscle & tendon spasms/seizures, (as opposed to chronic muscle pain) but don’t believe it is a direct cause of the SCT because I had them previous to my Amyloidosis diagnosis. Thus far, no Dr can explain them. But congratulations on your SCT, I hope your blood counts are normal or nearing normal. Have the Docs mentioned revaccinations at day 90?
Keep fighting the battle and continue to recover well. God Bless

I have no answer as I have not had a stem cell transplant. Fingers crossed

Janice, I remember being exhausted for months after the SCT, but then I had lost nearly 20 lbs and a bout of pneumonia the first month after discharged from hospital. Gradually, small walks got longer, I started swimming (in my own pool) and most of my strength returned. I still have about a 4-5 km daily limit for walking, and it takes overnight to recover.