It's great that you're still out walking and moving around — that's genuinely important to keep up for as long as you comfortably can. The spine pain you're noticing at night is worth paying attention to, as amyloid deposits can affect the spine (called spinal stenosis) and surrounding tissues.
Spinal stenosis from ATTR Show Full Answer
It's great that you're still out walking and moving around — that's genuinely important to keep up for as long as you comfortably can. The spine pain you're noticing at night is worth paying attention to, as amyloid deposits can affect the spine (called spinal stenosis) and surrounding tissues.
Spinal stenosis from ATTR amyloidosis can cause symptoms like:
- Lower back pain
- Shooting pain down the leg
- Numbness or tingling in the legs, buttocks, or feet
- Leg cramps When it comes to walking, there's a staging system specifically for how nerve symptoms affect mobility in hereditary amyloidosis:
- Stage 0 – No symptoms
- Stage 1 – Mild symptoms, can walk without help but may have some difficulty
- Stage 2 – Moderate symptoms, may need help walking
- Stage 3 – Severe symptoms, requires a wheelchair
Since you're still walking independently, that's a positive sign. However, nerve involvement can progress over time, affecting balance and strength. The nighttime spine pain is definitely something to raise with your cardiologist when you see them — and it may be worth asking for a referral to a neurologist too, since nerve involvement is a key part of ATTR amyloidosis management. Don't wait to mention it!
June 23
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