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Real members of MyAmyloidosisTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Do Any Of You Fellow ATTRwt Sufferers Have Ankle Nerve Problems?

A MyAmyloidosisTeam Member asked a question 💭
Greenwich, CT

I have had an incrediby sensative spot near my right ankle bone that I am sure is a damaged nerve. I have been to so many neurologists about the pain and none of them can figure out what causes it. I have decided it has something to do with nerve damage from Amyloidosis. The pain is getting worse and spreading over a bigger area. Hard to walk because of the pain some days.
Would love to know if anyone else has this problem.

September 26
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A MyAmyloidosisTeam Member

Thanks for comment on ankle pain. Will talk to Amyloidosis doctor at next appointment.

September 29
A MyAmyloidosisTeam Member

Quite possible, it may be a deposition of amyloid fibrils around the nerve that affects your ankle. It certainly should be considered as a cause of your pain.

September 29
A MyAmyloidosisTeam Member

Hi, I have been taking Allopurinol for 20 years now for kidney stones/gout. The pain near my ankle is more recent and affects the nerve that passes right near the ankle bone. Since no one can figure out why I have that pain, I'm beginning to think is has something to do with ATTRwt..

September 28
A MyAmyloidosisTeam Member

I have been on vyndamax for four months now and have lost a lot of weight. I also have suffered 4-5 gout flare ups in both feet….very painfull and lasts for 3-4days. Colchicine prescription seems to help clear up the gout.

September 28
A MyAmyloidosisTeam Member

Thanks for sharing your issues with the ankle problem. I have a feeling these ATTR proteins can reach any part of the body. I had a triple spinal fusion a few years ago which I think may have been due to ATTRwt. Hard to tell but these things keep cropping up.

September 26

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