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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

Thsnk your response. I go to my ATTRwt doctor tomorrow for a 6 month check up. Will ask him what he thinks we should do about the nerve pain. I'll let you know,

October 21
A MyAmyloidosisTeam Member

Do you see a neurologist? I have peripheral neuropathy due to wt ATTR Amyloidosis. I was taking gabapentin for my nerve damage but it had quit helping. They changed me to Lyrica and it is helping more with the pain. I also use insulin infusions to reverse the neuropathy in my arms, hands, legs and feet.

October 21
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

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