@divyanshi, welcome to Connect. Mayo Clinic Connect is a place where members share their experiences to gain a better understanding of their diagnosis, what they can except and maybe some insight on what they can talk with their providers about at their next appointment. Unfortunately, Mayo Clinic Connect cannot diagnose or offer medical advice. @divyanshi, if you don't mind me asking and if you are comfortable sharing, how have you been instructed to manage the diagnosis? Is the pigmentation of your eye altering your vision at all or what side-effects are you dealing with?
I am having amyloidosis on skin..Doctor told not to scrub but i don't even touch it still pigmentation is growing.. I understand not to get any medical service but at least some precautions or lifestyle changes so that i can keep it in control
Justin McClanahan
@JustinMcClanahan
@JustinMcClanahan
Posts: 1544
Joined: Jun 01, 2016
I am having amyloidosis on skin..Doctor told not to scrub but i don't even touch it still pigmentation is growing.. I understand not to get any medical service but at least some precautions or lifestyle changes so that i can keep it in control
@divyanshi, macular amyloidosis sounds like it is quite rare. If you'd like, there are a few other discussions on Connect regarding amyloidosis, but members have discussed other types of amyloidosis. They may be able to offer some general insights in to living with a rare blood cancer. Here are a few of those discussions:
– https://connect.mayoclinic.org/discussion/al-amyloidosis/
– Current diagnosis is multiple myeloma and amyloidosis, https://connect.mayoclinic.org/discussion/what-a-shocker/
@JustinMcClanahan
@divyanshi, welcome to Connect. Mayo Clinic Connect is a place where members share their experiences to gain a better understanding of their diagnosis, what they can except and maybe some insight on what they can talk with their providers about at their next appointment. Unfortunately, Mayo Clinic Connect cannot diagnose or offer medical advice. @divyanshi, if you don't mind me asking and if you are comfortable sharing, how have you been instructed to manage the diagnosis? Is the pigmentation of your eye altering your vision at all or what side-effects are you dealing with?