Macular amyloidosis

Posted by divyanshi @divyanshi, Feb 3, 2019

Hi everyone,
Can you please tell me how to manage macular amyloidosis.. The pigmentation is increasing slowly and i am super stressed out.. Please help

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@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?

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@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?

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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

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@divyanshi

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

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@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/

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They have light therapy and chemical peels. I myself prefer the chemical peels because when the peeling process is over your skin feels refreshed and rejuvenated. And ĥelps me feel in a little better spirits. It will take a few times before you will notice results. I was thinking my face resembled macular amylidosis but not I'm not at this point bc with juvenile hemochromatosis...hyperpigmentation on the face is a signature sign. I have yet to see a dermatologist and a skin biopsy for confirmation on this. But I hope this helps and understand your feelings concerning this. I was very self conscious before on what others thought upon seeing this and before I knew the cause and that there are others out there going through the same. I'm beginning to see that I shouldn't be ashamed of my appearance but to embrace it and wear my flaws like a badge of courage and be a reminder to others to not judge and be kind to one another. Because underneath those flaws you never know that person's story.

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