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A MyAmyloidosisTeam Member asked a question 💭
September 27, 2025
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A MyAmyloidosisTeam Member

Morning Shirley,as you know my amyloid problems are of the "Wild" variety with dodgy heart valve and peripheral neuropathy in the main. In a few days time I shall have scans to establish suitability for a TEVI valve and for the sleep/pain I have been taking Amitriptyline 10mgs nightly. My sleep pattern is much improved but I fear that Sheldon was right, pain in my right leg became intolerable, came off the tablet, pain now as it was previously with improved sleep unaffected. Will use this drug on an as and when basis in future. The pain runs from the buttock via the knee and down the front of the shin to the ankle, increases with activity and returns to near zero with rest. I also suffer with restless legs which will trigger the pain early morning and awaken me.
Comment from the MyAmyloidosisTeam would be much appreciated.

September 28, 2025
MyAmyloidosisTeam

AL amyloidosis can affect both the peripheral and autonomic nervous systems. Here are the main nervous system symptoms to watch for:

• Pain, numbness, and tingling (especially in hands, feet, and lower legs)
• Changes in blood pressure and heart rate
• Dizziness after standing quickly
• Loss of sensitivity to temperature
Show Full Answer

AL amyloidosis can affect both the peripheral and autonomic nervous systems. Here are the main nervous system symptoms to watch for:

• Pain, numbness, and tingling (especially in hands, feet, and lower legs)
• Changes in blood pressure and heart rate
• Dizziness after standing quickly
• Loss of sensitivity to temperature
• Memory problems
• Vision problems
• Confusion
• Headache
• Loss of sense of taste
• Erectile dysfunction The nervous system effects can be categorized into three main types:

1. Peripheral neuropathy - affecting nerves in the limbs
2. Autonomic neuropathy - affecting nerves that control body functions
3. Carpal tunnel syndrome - pressure on wrist nerves

While treatment may help improve these symptoms, some people may continue to experience nerve-related symptoms even after treatment is completed.

September 27, 2025
A MyAmyloidosisTeam Member

Hi Shirley. I have hattr (hereditary) amyloidosis but it definitely affects my nervous system. There is a great article on this site called "7 hATTR Amyloidosis Symptoms To Watch For" that describes very well how the nervous system is affected. This article describes all the symptoms I suffer with. Let me know if I can be of further help.

October 2, 2025

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