Steady with my numbers... just maintenance. Still battling some muscle loss and now for some reason, I have this great tan, and yet I don't get out in the sun, nor do I use tanning products. Strange
I was diagnosed with amyloidosis in September 2017. After years of not knowing what was wrong with me. I felt sick for at least 10 years prior to diagnosis. I went into kidney failure and after 21 days in the hospital, we had an answer. I'm on dialysis now and feel so much better. During chemotherapy, I started getting my suntan as well. I'm never in the sun either. I have itchy patches all over my body. My skin is very dry. I accidentally found out that if I use alcohol prep pads on a itchy spot, it helps. Our skin cell turn over seems to be accelerated. But the prep pads reveal brand new skin underneath. I have no skin problems other than this dryness. Be careful and wipe gently. I still feel great. I'm tired from being anemic, so I up my protein intake. Still skinny and no muscle mass. But happy to still be here. God bless and take care.
Hi Elizabeth, I am happy to read you have had amylodosis for over 10 years and your doing well now . I was diagnosed June 2018 and I am doing really well . Still trying to educate myself and see if others have the same systems I have . I only read about the heart involvement . I seem to have more issues with my skin and GI tract . Always like to hear from someone going through same.
@@carmenholcombe596 Hi Carmen, it is nice to find other people who are sharing their experiences with this rare disease. It feels good to have a diagnosis finally. I had never been sick with anything before I. No diabetes, or heart conditions. Mine started out with high blood pressure in my 30s. I'm 52 now. I had the amyloidosis all over my intestines and put me into kidney failure. I do diaylisis 3 times a week. Weirdly, I feel physically better than I have in years. I have some joint pain and with my 'chemo tan' I have some itchy spots that I clean with alcohol prep pads. My stomach is sensitive and I can't have any dairy anymore. I eat alot of Chinese and Japanese food. My labs come back good. My Doctors can't get a good read on light chains. Maybe because of the constant blood cleaning with diaylisis.
Hi Dan, Glad you are feeling good. Possibly some of the meds have a side effect that make you more sensitive to the sun and ultra violet light? Because you go into the sun very little, maybe you're getting a general overall tan from the ultraviolet light where someone else might burn? My wife and I are praying for you nightly! One year after diagnosis I'm still not certain if I have localized or just caught it in an early stage. I had surgery to remove Amyloid from the colon, started having heart PVC's and some protein in the urine. The protein level went down some which is good, another test in 6 weeks. Thanks for your positive inspirational video's. Living with uncertainty is a new way of living however it keeps me from being complacent and taking things for granted.
Hi Dan, it's great to see you. About your digestive tract. I swear, I have the same thing as you. I can actually follow my intestines through my skin on certain days. It's bizarre. And then on other days, the swelling is like a soccer ball. I preferred seeing little feet but that's past. Ha-ha-ha. I dunno about your tan, right now I'm green. Take good care. Hang in there! We're routing for ya all.
Dan..Just found you with this video, so have NO history of your journey. I have a question, you actually answered..I have the severe swelling in upper stomach you mention..you hinted you were doing something to take care of it. I thought mine was sudden obesity from 4 yrs of antibotics/anti vitals etc..
Dan...I am on carfilzomb...have you come across doxycycline or monoclonal antibody 11-1F4 discussed at the 2017 ASH conference with Dr Suzanne Lentzsch, it seems to pull out the amyloid .. I have added the doxycycline to my regime and it also removes the amyloid..my nose are great Light chain normal but now the albumin has risen a lot thus year. Plus the gross leakage if protein decreased drastically also..so the maintenance continues monthly..The antibody I mentioned is a further step when I need it....
My upep came back all proteins detected. The blood was normal except for IGM WHICH WAS 300.. Does this have any thing to do with amyloidosis.?no monoclanol bands weren't detected
You may want to find out if you have Addison's disease as a result of the Amyloidosis. Addison's disease can give you a tanned appearance. President Kennedy had this condition.
